I raced home today to catch the last half of our son’s telephone conference family therapy session.
I was hopeful we would solidify our December 20th discharge date. I need’nt have bothered, his therapist informed us that he had refused to come to therapy. He told his therapist “I know my rights you can’t make me go.” The next conversation was that Damian had chosen a $100 Christmas gift provided by Coastal Harbor.
Some background….Two weeks ago (in our supposedly last family therapy session) we found out that our son had refused to work at school for a whole day while he constructed a 3 page Christmas Gift List for us. When we shared that each child in our family was being given $50 to donate to a charity of their choice and not writing gift lists this year, our son became silent and refused to finish the therapy session. The next several days he told staff he “would be staying at Coastal Harbor for Christmas” and “when was he going to make his $100 gift purchase”. He began self harm statements intentionally so he would not be discharged. I told his therapist under no circumstances should Damian be allowed to “choose a gift from Coastal Harbor”.
They (The Coastal Harbor Administration) felt this was unfair and this past Sunday let him choose a gift.
He hasn’t called us since Sunday and today refused our family therapy session.
Remember when he came home from the Crisi Stabilization Unit with a cup full of Gummi bears? We are here again!
So now my son has turned in another ticket to ride his lonely carousel. But hey $100 sneakers are more important, right?
I have surely been nicknamed “The Grinch” by nameless, faceless people who think they know more about me son than me.
I am unreasonably furious and so deeply tired.
December 13, 2017.
He is set for official discharge.
Our therapy session ended today with him telling us “I won’t be home long”.
I can’t argue with that. I have learned the hard way that there is literally nothing I can do to make him stay. So I answer from the newly created space in my brain “Okay. I hope you can enjoy your time while you are home.” His reply is silence and then a flash of words meant to cause me pain, “So you don’t want me to stay. You just want me to visit and then go back?”
Before I can react emotionally, the new place in my brain responds without hesitation “I bought you some new jeans and those soft long sleeve shirts you like. I put them in your dresser last night.”
Silence, then more silence. As I am about to speak before I should, he makes a half hearted attempt to encite again. “You just don’t care and you are done with me and I don’t want to come back at all.”
Your turn, your turn my brain screams. It’s your turn to respond. Literally out of nowhere comes the freakin song from Vanilla Ice, and all I hear in my brain is “Stop, collaborate, and listen.” People my mind has been worked hard in therapy the last two months. I started out the gate running and then this , this is what my brain gives me.
So, Vanilla Ice spoke to my son. “Listen (son) we need to work together during therapy and you ARE coming home so I will listen to whatever you need to tell me.”
I work for two months on 2-3 times weekly therapy and a disgraced rapper saves our therapy session.
We have received the phone call that lets us know that medicaid has decided that our son is “well enough” to come back.
He has not met a single therapy goal but has not tried to kill himself or anyone else in 3 weeks so he no longer requires residential treatment.
The insanity carousel just keeps going round and round and the same song keeps playing. It’s only rider knows how to get a never ending supply of tickets.
Sometimes he lets us ride with him for a week or two, but soon he is holding back his tickets and rides alone once again.
Our son is coming back, but he is not coming home. He will cycle through our house like a tornado and then disappear again and again. All we can do is batten down the hatches and pray that the tornado only harms our hearts and does not destroy itself.
Patience is learning that what will be cannot be controlled, only mitigated.
For the past 3 1/2 months everything revolved around our son. His therapist, psychologist, and psychiatric appointments. His self harm, crisis intervention teams, and hospitalizations. His hand crafted daily schedule, his medications, and his school.
Then in the last 3 weeks a flurry of decisions, hours of phone calls, piteous pleadings to any official who had the bad luck to answer the phone, anxious texts at all hours of the day, and fitful nightmare filled nights.
Then came the fast, intense feeling of peace. Which was quickly followed by the drop to your knees guilt.
Now there is just silence and an empty void. I had been parenting like I was on fire and now the fire is gone. Leaving behind a burned out shell, a blackened and charred ghost of the structure it was. Oh how I wish that fire could have destroyed the memories and events that have caused our family such pain. But our most intense memories cling to us no matter the devastation we survive.
Objects and tangible items were not lost in this blaze, but hope was.
Now I begin the tiresome process of finding new hope. I have done this many times before with our son. This time is different. The new hope I persue is so elusive and fleeting that I cannot hear its beckoning whispers or see its shadows of light. I have looked in the places where it was found in the past, but for now it is no where to be found.
Current stats of the past 2 years.
*15 months in Psychiatric Residential Treatment Facilities.
*5 months in Psychiatric Hospitalizations.
*4 months (spread out over the past 2 years) at home.
*13 Psychiatric Hospitalizations.
*4 Psychiatric Residential Treatment Facilities.
*6 different schools.
*17 interruptions in his schooling.
*13 different psychiatrists, each of them made medication changes.
*21 at-home intervention therapists.
*18 inpatient-Psychiatric therapists.
*7 case managers.
Tonight is our last night with our son for what will most likely be many months. Garrett will leave with him at 5:30 AM for the 4.5 hour drive to Coastal Harbor in Savannah GA. I have had 3 other nights like this in the past 2 years and they are like a funeral. Saying goodbye to the child I know now, for when he finally returns he is always different. Changed by time, people, and a life I will have no part in for months.
The grief is overwhelming and I try to sound happy and upbeat while making sure I tell him I love him so many times that it becomes a circulating mantra in our conversation.
I used to remind him to brush his teeth, change his underwear, put deodorant on, write in his journal, and listen to his doctors and staff.
Now I just tell him that I love him and will always be here waiting for him to choose life outside of the hospitals.
I tell him I can’t enable him anymore and that we will not visit him while he is at Coastal Harbor. I will not call him. He will need to call us. I remind him that words mean nothing to us anymore. That only actions can speak to us now. I will not allow him to promise or plead to us at Coastal Harbor. Days of good behavior will not be praised. They will be totaled into weeks and months to receive praise.
We love you but cannot live with you, only your actions can change that.
Make new choices, the old ones haven’t worked.
Good night and goodbye my beautiful and tragically broken son.
We are still searching for a PRTF placement for “Little Big Man”.
The hurricane Irma has made an difficult situation turn untenable there are no beds available in 2 of the 5 PRTFs because they are having to evacuate.
The only PRTF (Hillside) that had space available said that “His case is too acute for us to commit to his care.”
So Damian is “too acute” for Psychiatric residential treatment at Hillside.
But, he can come home from a Crisis Stabilization Unit. Apparently we are better equipped than a PRTF.
Garrett picked Damian up tonight out of a room with like 30 kids busy watching a projection screen movie. Damian’s got a bag of popcorn, a soda, and a huge cup of candy. He is covered in drawings with marker all over his arms and neck (flowers, rainbows, smiley faces, unicorns). He has been out of school with no classes for a week while at the CSU. He does not need to communicate with us and spends his days drawing or making art, and participating in group counseling “if he wants to”. His evenings are movies and popcorn and ice cream (if you don’t assault the staff).
My other kids meanwhile, have attended boring curriculum nights, gone to the dentist, had flu shots, gone to school, done daily chores and homework. Tonight they went for a bike ride, had apples for dessert, and read books before bed.
Hmmmm, wonder why he keeps going to the hospital.
- It is with a heavy soul that I share that “Little Big Man” was admitted to Willow brook Psychiatric Hospital last night. He has been struggling so much since I went back to work. His first 2 days at school were good, but when I came home later than usual on Tuesday he was already in fighting mode. Nothing could stop it, no distraction proved effective, he was gone. We had avoided the hospital several times in the past 10 days but not this time.
All we can do now is pray that he does not choose to repeat his usual cycle. He has not in the past 2 years stayed at home for more than 10 days after a hospitalization. His records of staying home only occurred after he was released from a residential facility not the hospital. One hospitalization leads quickly to another, then another, then another which leads straight to residential care.
We are expecting a discharge date of Sunday or Monday. The countdown will reset when he comes home.
Things I hate today…
- Measuring my time with my son.
- Hospitals where he can refuse to talk to us.
- Having to repeat what happened last night to 5 different case managers.
- Having the emergency room staff say, “Hey ________” when we walk in the door.
- Having the emergency room security staff say “I’m not gonna go over the protocols cause you like must have them memorized by now”.
- Crying in front of my other children before I can race away to hide.
- Having yet another family meeting to try to explain why their brother hurts himself and others.
- Having no control.
- Having a new job where no one knows our story and having to answer “I’m fine”.
- Losing hope.
Today was rough and the crisis team was at our house from 3-6pm. Nothing could stop the stream of anger that Damian was aiming at anyone near him. I arrived home from work at 5:00 to an exhausted crisis team and husband who was beyond done. I tried to distract, disrupt, and soothe for 45 minutes before leaving the room in tears and frustration.
I stepped outside to sit on the porch. I looked up and saw our beautiful neighborhood with children playing and neighbors talking and for 1 quick second the jealousy rose to the surface like hot pain. Then I got up and told the crisis team to carry Damian outside if they had to.
One of my most supportive neighbors has a new puppy and I asked if we could borrow her puppy for some love time with Damian. I told Damian to come with me now and he begrudging went. With the puppy in his arms this sweet woman went on to praise Damian for calming the puppy down with his gentle petting. She continued to praise him the whole time and called out praise to him even as we were walking home. She didn’t question or ask why, she just knew she just acted. She and that puppy just ended a 3 hour crisis. The village is strong and we are so blessed. Thank you neighbor!
It’s midnight and the crisis team just left our house. We managed to use emergency meds to help calm him down and fall asleep. .
Change is good if you don’t have a mental health disorder. If you do, then change is a monumental, slaptastic, horrifying, nightmare inducing pain in the ass. I started back to school this week. He cannot cope with this change and has turned the family upside down again.
He has not slept since Tuesday night. He stopped eating and now will only drink milk that has 3 ice cubes in it. Three ice cubes that he must thoroughly examine before placing them in the milk.
He has definitely begun a manic stage and we are going straight to the psychiatrist in the morning.
Prayers and good thoughts sent out into the universe needed please.