We Skyped with Damian today. He has not had any suicidal ideation or attempts since he began at Devereux. Nor has he had to be restrained or secluded due to violence. He reached level 2 out of 4 levels this week. Yet it is still so surreal to see him happy and smiley in his little prison. There is a level of acceptance he has that is simply terrifying to me. I fear when we open the gates to set him free, Damian may always still long for the superficial attachments and clear cut black & white of a restricted life. I can only continue to hope and pray that I am wrong and one day he will want and fight for his freedom. Because no matter how long or how often, we will be right here at those gates waiting for him to step through.
Several people have asked who pays for all,of the care for Damian. By The time Damian had his second hospital stay he has maxed out my employer health insurance. And my insurance has a proviso that states they will not pay for residential care services even if a doctor says he needs it. Which I have no idea how that can even be legal with the supposed mental health care parity law, but somehow it is.
So we took Damian off of our insurance so his Medicaid benefits would kick in. The problem we didn’t understand when we did that is…Medicaid does not approve 3 of the “newer” medications he has been taking, so those are paid out of pocket. They also need to be prescribed by a psychiatrist which is not using Medicaid. Because Medicaid Drs. cant prescribe these meds that are not on the “approved” list. So that means we also have to pay a psychiatrist out of pocket to prescribe his meds.
This gets more difficult when he is at PRTF because we have to pay for a psychiatrist to consult with the psychiatrist on staff at Deveroux. We also have to pay for a pharmacy to deliver the meds to Deveroux. Essentially even though he is receiving “free” PRTF care with his Medicaid, we are still having to pay roughly $2,000 every 4 weeks.
This is not a cry for financial help, we are managing, but how in the heck do other families manage this? The answer unfortunately is what they advised us to do, which was surrender our parental rights to the state. But that doesn’t solve the medication portion. The state would then have to switch him back to older drugs (that we already tried and were disasterous to his health. Like the Hadol that gave him muscle seizures and the Lithium that gave him tremors and were destroying his thyroid and kidneys.
We do not need gun control in this country, what we need is solid, comprehensive, systematic compassionate mental health parity.
We do need more substance abuse programs, but what we need even more than that is mental health care that is accessible to people so they don’t “self medicate” with drugs and alcohol.
Sunday Garrett and Emma went to visit Damian at Deveraux. He refused to speak with Garrett but went through pictures and memories with Emma and played a game on daddy’s phone. Damian ended the visit about 20 minutes after it began saying he wanted to go back to his “cabin”. He hugged Emma and walked away.
Emma has been having her own struggles lately with her ADHD and we haven’t found a medication that works for her yet. Today in the car she said, “sometimes I wish Damian wasn’t in our family cause then I wouldn’t be so sad about him.” Garrett opened his mouth to talk with her about how there are some things in life that we don’t choose but are ours to deal with none the less. But then Emma said, “But he is my brother so I am sad for him so bad and if he wasn’t my brother I guess I would be so sad anyway cause I would miss him. So I guess I am just going to have to keep being sad.”
All I could think about was that line from “The Dance” song. “I could have missed the pain but then I would have missed the dance.”
There is not much to update about Damian, we spoke to him on the phone today and he was obviously in a manic episode. The world was perfect and wonderful with ice cream for dessert. His voice happy and filled with praise for the day and everyone in it. He spoke of the clouds in the sky and the rain dripping from the window. He told us about how he has decided to become a doctor and live in Florida. He told us he loved us and that he would call us again soon.
Today being an hour away with adults who have known him for only 3 days he is happy and content. Laying in his prison like room on a metal bed that is bolted to the floor in a building that is surrounded by a tall barbed wire fence, he is happy. That my friends is what our family is dealing with. It is a moment that has caused my hope to forever be lessened.
This is the link to Devereux Psychiatric Residential Treatment where Damian is staying.
We brought Damian to Deveraux this morning. Damian is gone again. My parental rights limited again. My daily mothering suspended and limited to a 10 minute daily phone call. My arms empty, reduced to a weekly visit. Not for days or even weeks, but months.
Like a child clinging to a wishing well penny, I wish. Maybe this time….
Damian has been approved for PRTF (Psychiatric Residential Treatment Facility). We bring him to “Deveroux” in Kennessaw, GA at 11:00 am tomorrow 7/13/16.
We begin our loss/grief and cling to the hope of a future, again.
“Outside, the sun shines. Inside, there’s only darkness. The blackness is hard to describe, as it’s more than words will allow. It’s a nothing that becomes everything there is. And what one sees is only a fraction of the trauma inflicted.”
-Justin Ordoñez, Sykosa
Garrett picked Damian up from River Edge Crisis Stabilization Unit on Saturday afternoon. It is located in the lower end of Macon and with weekend traffic it was a 6 hour round trip.
Damian was/is not remorseful, contrite, or apologetic. He walked in the door and immediately demanded that we go out and get him a chocolate cake with Spider-Man on it. (His birthday was Sunday). You could have heard a pin drop in the house. I took a deep breath and opened my mouth, then….
Ella-“Is he really gonna get to pick out a cake? I had to miss dance class cause Daddy was getting Damian and you had to go get Emma from her friend’s house.”
Noah-“Well it is his birthday but I don’t feel like celebrating, it shouldn’t be a celebration when he gets home from the hospital.” Turning to Damian, “we called you and left messages, I left you a message and you wouldn’t talk to us for like a whole week.”
Garrett- “okay we need to remember that Damian loves us and he has been struggling.”
Maya-“I love Damian but I am tired of having to pretend like what he says and does , doesn’t make me angry. And, like I am angry. He just does and says whatever he wants all the time. He pretends to be all sweet and nice like when people are here but then is horrible to us. So like I know he can be nice.”
Me-“Remember how we talked about understanding a situation and what to say or not to say in a situation? Remember how our counselor taught us that Damian is working on that?”
Jaia- looking at Damian, “I don’t think you’re working on that. I think you think it’s too much work so you just don’t.”
Damian-” I wrote you sorry letters. and…”
Noah-” yeah I have 13 sorry letters in my room from you.”
Me- “Enough! We are all feeling really upset right now and we will all get to share our feelings, but right now we are going to separate and cool off. So everyone grab a book and find a place to read.”
Several protests and whining later.
Garrett- “Momm said now!”
As everyone starts to walk away…
Damian- “While they read we are going to get my cake, right?”
I literally had to drag everyone yelling and hollering downstairs.
Not a good start.
It has been six days since we have spoken to Damian. He has refused visitation with us and refused all of our phone calls.
We made the hard call to accept a referral to another PRTF (Psychiatric Residential Treatment Facility) placement. His paperwork was sent in today to Medicaid and now that wait begins. We are visiting a PRTF called Deveroux in Kennesaw, GA tomorrow. Hillside is not an option as they have no expected beds available for 6 more weeks.
He is being discharged July 9th from the CSU and we pray he will be able to stay home until his PRTF application is accepted or denied. Please let it be accepted or I am afraid we will have to continue the painful hospital cycle again. Prayers and good thoughts sent out to the universe are deeply appreciated.
As we grew up into adults we learned that a series of lies weaved a web around our beliefs as children. A huge chunk of our lives is spent believing in the unbelievable. We learn that Superman, Santa, tooth fairies, Spider-man, and white knights do not exist.
When faced with these truths I find that adults fall into 2 categories. The first group accepts these hard realities with the same fervor that they once accepted the illusions and never question again.
The second group accept the new truths as versions of the fairy lies. They still maintain some hidden magic in their hearts that make them search out real life versions of childhood fantasies.
I have always been in the 2nd group refusing to believe that reality does not maintain some room for the magical.
Today our superman flew into our lives. As patiently as Father Christmas listening to a wish list, he answered our questions. As quickly as Jack Frost he froze our deepest fears. As devious as the Easter Bunny he has found those hiding answers we so desperately needed.
As we run the confusing gauntlet of services, therapies, data, and paperwork we now have a knight in shining armor. We have been trying to connect with him for several months and today when we needed help more than ever he came riding in on his white horse.
It definitely won’t be easy but we have help.
Yep I’m glad I belong to the 2nd group of adults that deeply believe that all of our childhood magic lives on and were based upon not fantasy but real life people.
I want to…I can’t
Today they had a team meeting. Today they talked about our son. Today they talked about our family. Today they analyzed data, charts, and observations. Today they made presumptions, assumptions, statements, and medical opinions. Today they checked off lists. Today they issued the same medical plan we have been given before and before and before.
Today they said we should just call DFACS and enter into a surrender of parental rights so the state can care for him,which would carry a neglect charge for us.
Today part of me wants to…Today I shouldn’t have to…Today the state will not offer my son care at the expensive of losing his family…Today I can’t…Today I won’t!
But what about tomorrow? How long can I keep fighting this system?