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.
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.
We have just entered the Psychiatric Beauty Contest. We have put on our high heels, taped “the ladies” tight together and crammed ourselves into a dress two sizes too small.
We are in a contest to find a PRTF (youth residential care) placement for “Little Big Man”. There are only 5 such facilities in the whole state of Georgia. Let me say that again, 5 just 5. Those 5 PRTFs serve about 450 kids in total(But Georgia has 33 state prisons that house more than 53,000 inmates).
And so our Beauty Competition for PRTF space begins. Now according to all the glossy brochures and department guidelines, youth are taken on a 1st come, 1st serve basis. HA-that’s freaking hysterical. If you have 4-5 kids lined up for 1 PRTF slot who are you gonna pick… The 1st time suicide attempt and runaway who has never been medicated or given consistent therapy? The kid who refuses to talk and cuts himself? The kid who has been through 5 PRTFs in 2 years? The kid who seems to assault others for fun?
Now, none of the choices are great, but add in mitigating factors like..
1. Private Health Insurance pays more per kid than Medicaid.
2. Department of Family & Children Services can make or break your business based upon recommendations to the state on who should serve foster children in need of PRTF.
3. How many resources will we need to use for this kid (we are paid the same rate regardless of an individual kids intensity)?
4. Are parents or family involved (if they are, that’s more resources we need to use toward family and parent counseling)?
Now, who is getting that PRTF slot?
So, beautifully glossy photos of my family have been emailed with detailed explanations of how we believe in the PRTF we are applying for. How we have brought library book donations, staff Holiday gifts, and bountiful weekly staff snack baskets to PRTFs in the past. How we are a low maintenance, mental health educated, but humble family. Finally, I will have our CME call you, or IFI provider call you, and I will call you several times a day. All to ensure you (our chosen PRTF) understand how committed we are to winning this Psychiatric Beauty Contest.
- 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.