adoption, mental illness

When It’s Not Enough: Adventures in Getting Help

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It’s not enough. I’m not enough. All of the work we have been doing for the last 3 years is not enough to help our Little Bit. 10-year-old Mary is starting puberty. She is also starting to unravel in terms of her mental health. She is back inpatient again at the psychiatric hospital. So, yes, I feel like I am not enough for our girl right now.

During her last meltdown she locked the door to her room and then jumped out of her window. Barefoot. Mary then got into a fight with our outside garbage bin (she won) while screaming at me. I couldn’t stop her. She ran a mile to a friend’s house in bare feet screaming that she needed the police because her mom was trying to kill her. Of course the police came with the ambulance. But they came to take her back to the psychiatric hospital.

We have used up all of the local resources. We have In-Home Intensive Child and Adolescent Psychiatric Services (IICAPS.) She’s been through trauma-focused cognitive behavioral therapy (TF-CBT,) Family Systems therapy, ongoing trauma work, Intensive Outpatient Treatment (IOP,) Partial Hospitalization Placement (PHP,) medication management, and many inpatient stays. Was that all one sentence? We’ve also read every book, checked all of the research we could find on developmental trauma, and parented therapeutically using the Trust Based Relational Intervention model (TBRI) No matter how many acronyms we throw around, she is still stuck in a downward spiral.

I am helpless to heal the deep wounds she carries from trauma. They will never be entirely healed, let’s be honest. But we want to get her to the point where she is functioning at home, as opposed to being in fight/flight mode most of the time. I think puberty has started to re-trigger some of the trauma that she had already come to terms with.

Our entire goal is to keep her safe. We want her safe at home, not inpatient. I did find a great model for attachment and trauma work done in the home. In-home services are the most effective for our daughter, but most programs are not specifically  trauma-focused. Even if they are, it is not for complex, developmental trauma. Thank goodness I found the Attachment, Regulation, Cooperation model (ARC ) through The Justice Resource Institute (JRI.)

JRI is dedicated to helping children and adolescents mental health. They are one of the leaders in the field of research on developmental, complex trauma. (Often referred to as C-PTSD. More letters, I know!) Unfortunately, they won’t take insurance. They won’t take cash. They only contract through the Department Of Children and Families (DCF.)

So we are asking begging for their help. We are in the process of applying for voluntary services. I’m not sure what will happen, but I’m hopeful. We are in the fight of our lives right now. It isn’t us against our child. It’s us fighting with our child against the trauma of her past. The question is not if we will continue the fight. The question is whether or not the state of Connecticut will join us.

So here I sit, typing away my jumble of letters and acronyms. Since when did the alphabet take over my life?! All that’s left to do is wait. And hope. Will you hope along with us?

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**Names have been changed to protect the privacy of those involved.

**If you want information about ARC or JRI you can go to www.JRI.org or www.traumacenter.org to learn more.

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family, mental illness

She’s Back! : Transitioning Home From Inpatient

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She’s back! In true to Mary fashion she is as stylish as ever. Ever the dramatic celebrity-in-training, she bursts through the door shouting, “I’m here!” Photos are snapped, even though Dad and Mom are a poor substitute for real paparazzi.

She bounds up the stairs, two at time. “I’m coming for you, Mama! I’m here!!!” She has promised me during our last phone chat that I may squish her and kiss her and squeeze her for 60 full seconds. Luke feigns starting his iPhone timer and I attack! I hug and I squish and kiss her cheeks and her head and her hands and even her stinky little feet. My Mary is home!!! She rolls her eyes in mock annoyance but then offers me another full minute, “if I need it.” I do.

I look into her eyes and it’s all I need to see that Mary is back, really back, mentally and physically. I don’t mean that she is “cured.” Not by a long shot.There is no such thing. What I mean is that she is stable and safe. She has switched over to a new medication altogether, and she should be at the therapeutic dose. She’s had a lot of therapy.

She is ready to be home with us. I am choking back tears looking at my daughter’s face after 2 weeks away from us. After all the medication adjustments, the family therapy sessions (I had to FaceTime in), all the paperwork, our family is together again.

This is my chance to shower her with all the love and delight she deserves. She immediately sets about showing me all of the work she’s completed at the hospital. She got school work, and an anger thermometer with coping skills. She’s made these type of rating scales a million times over the last several years. She really wants to show me how ready she is to be here. I am so proud of her that I say it in 3 different voices and burst into spontaneous, ridiculous song. She beams

The next day is Saturday, and she begins the day with her trauma therapist. (Bless this amazing therapist for seeing my child on Saturdays!!!) Everyone is ready for her routine to resume. Her Partial Hospitalization afternoon program will resume on Monday. Her school is ready and notified, and we’ve had a meeting to discuss a safety plan  (if necessary.)

She spends the weekend cuddling me, cuddling her dad, and attempting some “team work” with Carl. He is pretty upset that she is home. Not because he doesn’t love his sister. It’s just hard to share the attention again. It triggers his fear that their won’t be enough love to go around. That his caregivers might get so caught up in Mary we leave him in dire straits.

You don’t have to be perfect, honey. Just be here. Be my Mary.

**Names have been changed to protect the privacy of those involved.

 

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mental illness, parenting

Having a Child With Mental Ilness: Adventures in Living on a Prayer 

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I love this little girl all the way down to her little pinky toe. I love her to the moon and back. I love her like a jelly bean at Easter. These are the things I have to say to her over the phone. So far away. “I miss you major,” I tell her.

Unfortunately Mary is back at the inpatient unit in the psychiatric hospital.She only made it home for about a week. I am just home from 5 days in the hospital after having spinal fusion surgery. We had a few days together before it just got to be too much for her.

Maybe my surgery was a huge trigger. Maybe the onset of puberty is like a freight train running us all over. Maybe her medication just isn’t there yet. There are so many pieces to this complicated puzzle, that is part of our daughter.

Mary slept over at a friend’s house one night and told her friend’s mother she was too scared to sleep upstairs. She claimed she could see her biological parents waiting for her up there. Her visual delusions have been increasing.

Friday at school she had an outburst, yelling at a girl who was absent (presumably for being absent.) After school she has another tantrum at her Partial Hospitalization Program. She was screaming and kicking and generally unsafe.

When calm, Mary was able to tell them she hears more voices than she admits to anyone. The voices tell her to kill me and she is afraid of them. She has drawn and written a lot more about my death lately. She is so afraid her mommy will die. After all, her biological mother left. I am sure these are all fears pertaining to her trauma that are flooding back now to take control of Mary.

Over the weekend, she had another melt-down. Papa wouldn’t let her touch something dangerous in his workshop, she was defiant. When he raised his voice and repeated his direction, she lost control. She ran out of the house to the road. She wasn’t wearing shoes or a coat and it was winter. 

My husband was able to pick her up and bring her home.  I was locked in my room, my parents had Carl, and Luke was keeping Mary safe.I Face Timed her from my locked room to talk her down, and try our deep breathing together. Luke was able to give her a PRN to calm her. She fell asleep in her room still adamant that nothing was wrong and she didn’t need to wear shoes. Ever.

As Mary slept, the crisis worker gave us a safety evaluation. We reviewed the safety plan we had with him.  We explained why we locked up our knives, removed  sharps from her room, and activated the locked door plan when she was triggered. He looked at us for a long time, silently, and then asked us if we felt safe. Not, “Do you feel safe with the plan?” But just, “Do you feel safe?” 

The answer is no. We mulled it over until the next day, but truthfully, we weren’t safe. Mary has not been physically violent or disassociating since 2014. Her medication isn’t working anymore. Therapy is an ongoing process, but without the right medication, she is trapped inside this cycle. We made the decision to send her back to the inpatient  unit while her new medication continued to be titrated. We will not take chances with her safety. We cannot take chances with mine. This is nonnegotiable.

All of this happened as I lied helpless in bed. I felt like we were suddenly back in 2014, watching her fall apart all over again. To be honest, I felt a bit defeated. She’s had ups and downs but she hasn’t had these kind of meltdowns in years. She’s been living a relatively normal life (albeit with a the help of medication and therapy.) It’s very hard for me to admit that things have been spiraling with her for a short while now. It’s just that she’s overcome so much. She’s living such a full and happy childhood. For the last few years she’s been so in control of her moods.

As I hobble around in my walker, or lie prone in my bed, I get a sense of helplessness. I need to recover. I need to be strong enough to be the mom she needs. Lying helpless in bed behind a locked door is all I can physically do for now. So here is where I pray.

“Please,” my prayer starts, “Please let the medication help her. Please don’t send us back to the starting line. And please, please, let me be strong enough to be the mom she needs.”

**Names have been changed to protect the privacy of those involved

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mental illness

Thank Hospital Vacation?

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I must be the weirdest mom ever to think that my major spinal surgery seems like a vacation. Trust me, a little fusion surgery was nothing compared to the chaos Mary was experiencing at home.  I had some complications, and needed a cat scan. They found one of my vertebrae was actually fractured. I sobbed in pain while they gave me every narcotic pain killer intravenously they could. Finally strong muscle relaxants were administered and I calmed down. I clutch Luke the entire time while he whispered soothing things into my hair and stroked my arm. Vacation, right?

I had trouble breathing so I went to the ICU for a day. I had an oxygen tank sort of plugged into my nose in order to help me continue breathing. Vacation, right?

I am in constant, excruciating pain. However, my meals are brought to me, and my daughter Mary isn’t attacking me here. There is significantly less screaming here than Mary is doing at home. I feel deep pain at the incision sight where the doctors cut so deeply into my spine. It doesn’t matter.  I’m safe and safe feels good. Yes, even with the deep and unrelenting pain, this might be a vacation.

Everyone smiles at me and offers to bring me things at the hospital. They help me use my walker (really hard for me to walk right now.) I get to order my meals from a menu. No one yells at me. No one is throwing things. And I haven’t seen one tantrum since I’ve been here. Not even from the patients! This MUST be some form of vacation.

The truth is I’m doing very poorly. The Physical Therapist came to see me and opened with,”I’m not trying to be mean” before helping me to a chair. That is where she wanted me to try and sit for an hour. I couldn’t do it.

The pain was so unbearable that I clutched the chair arm and  sobbed for a half an hour straight. I had an ice pack. I tried the PTSD calming strategies we use with Mary. I grounded myself by what I could see and hear. I sipped water and counted my breaths, trying to breathe in and out slowly. I tapped my fingers in a method I learned at a trauma workshop. I tried to picture the happy place I keep in my mind. I counted to 100 and back. I asked for a stress ball, in between giant, hiccuping sobs. There was mucus everywhere. Tears soaked my hospital gown I just couldn’t stop sobbing. .

“Stop crying,” they kept telling me, “You’ll hyperventilate.” 

“I’m trying!” I gasped, “I’m using my coping skills!”

Did it work? No. They ended up peeling me out of the chair after 30 hysterical minutes. I even had them close the sliding doors so I couldn’t disturb the other her ICU patients. I wanted to be so strong and finish the full hour sitting in a chair. I wanted to stop my sobbing hyperventilation and soldier through. I wanted to be in charge of my own body! But I was basically locked into an adult form of out-of-control behavior. I didn’t yell or throw things. I was very polite when I could get a word out. “Please,” I’d say, “I’m trying!”

I just couldn’t do it. They put me back in bed and administered strong pain medication and  more ice packs. My doctor was baffled. She didn’t know why it hurt so much but she was very concerned that I was adamant to keep going.

My doctor and the PT were concerned with my pain. I wasn’t. Here’s why: my pain is physical. When Mary sobs uncontrollably, tantrums, or panics, her pain is emotional. We can’t administer more pain medication and send her back to bed.

Her trauma is as real as my surgery. Her emotional pain is as real as my physical pain. I’ve made it home now and all I can do is be grateful. That was the absolute worst vacation ever.

**Names have been changed to protect the privacy of those involved.

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mental illness

Trauma Team Super-Heros: Safety Planning

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It seems like we are running through grade-school fire drills, but that isn’t the case. Right now we are preparing for our daughter, Mary, to return from an inpatient stay at a psychiatric hospital. She’s been having violent outbursts on the unit, so it’s possible she may still have them when she comes home. As they adjust her medication in the unit, we are making adjustments at home.

As we create a safety-plan for her return home we are simultaneously planning for my impending spinal fusion surgery. It’s all going to happen at some unknown point in time that is also very soon (?!??) Here’s what the plan looks like:

  • I will not be alone with Mary at any point in time until I am fully healed from surgery. Period.
  • We will remove heavy objects or anything that could be thrown, knocked over, or smashed from Mary’s room. This is for her safety and ours.
  • We will increase the amount of coping skills she can access from her room: body sock, thera-bands, play-doh, cardboard to crush, paper to rip, journal for writing, soft objects to throw or punch etc.
  • Luke and I have our phone always on us. If Mary shows signs of escalating we call for the mobile crisis team to come out. If she has auditory of visual hallucinations we will call mobile crisis for a safety evaluation.
  • If she becomes violent or dangerous, we call 911 for transport back to the hospital
  • Luke stays with Mary to keep her safe until help arrives.

Also, we have super heros helping us!

The Super-Hero Team supporting us when Mary transitions home consists of:

Superman: Their trauma therapist has some serious skills that can only been described as Kryptonion. Her X-Ray vision can see right through our kids into what’s really going on with them.  Her Trauma Focused Cognitive Behavioral Therapy has had almost supernatural success over the years. Sort of like Superman flying up to catch our kids when they were falling through trauma and PTSD. She sees the children no matter what other kinds of therapy they are having at the time.

Batman: The therapist at the partial hospitalization day program Mary will be attending is definitely batman. She has a batcave (office) with tons of coping skills (bat-gadgets.) She’s worked with both of our kids before, and she knows our family. You might even say she is familiar with Gotham City!

Wonder Woman: My husband and I see a therapist while our kids are in session to get better at being awesome trauma-informed therapeutic parents. She is Wonder Woman, because she has the “lasso of truth,” and can always get us to open up honestly about things.

Alfred: I think the Psychiatrist that will treat Mary at PHP is a lot like Alfred was to Batman. Instead of gadgets, he will be titrating Mary’s medication which will allow Batman to do her job.

The Scooby Gang: This consists of my parents, our children’s godparents, and family friends who are willing to watch the children (in separate settings) while I am in surgery. My parents have offered to take Carl for a few days if Mary isn’t safe with him while I’m in the hospital. This way, Luke can help Mary settle and regulate, while Nana and Papa spoil Carl.

 

I think we are about as prepared as possible. Now all we can do is wait.

Dear Trauma,

You might have won this time, but we’ll be back. And next time we will be ready for you!

Love,

Dedicated Trauma Parents

**Names have been changed to protect the privacy of those involved.

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mental illness

Tantrums From Beyond the Grave

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Roger with me at age 12

 

Roger was telling her to hurt me. Mary was writhing on the floor scratching and clawing at her hair and face, as she spoke to him. She then tore apart her bedroom and started screaming at other people who weren’t there. She screamed the neighbor’s name a few times shouting, “Call the police! We need the police!” She alternated between asking for the police because I was hurting her or because Roger was hurting her. In the meantime I attempted to hold her arms down away from me as she attacked me. I was lucky enough to leave the room, before I could get hurt.

Mary launched a fully loaded plastic bin and a trunk out of her bedroom door and down the hallway. Even though it’s been 2 years since she has had a violent outburst directed at me, I remembered to hide behind the bathroom doorframe. As soon as I could, I closed the door to her bedroom and called for help. Yes, the police would be coming after all.

While waiting for the ambulance I could hear Mary screeching from the other side of the door. She was relatively safe as I had already removed scissors and sharp or dangerous objects from her room. Obviously I hadn’t thought about the plastic bin or the trunk, but she’d removed them herself when launching them down the hall.

Half of her screams are wordless cries and howls. Some of them are directed at “Roger,” and another unidentified person. Sometimes she broke into an almost gentle, crooning song. Then she yells at me, “I hate spending time with you and I don’t want to be in this family! Roger tells me you make all the bad choices. He hates you! I HATE you!!! I don’t want to live here!” She throws her body against the door as if trying to physically break through it to get to me. In her all of her rage, she has forgotten that her door, like all bedroom doors, opens inward.

There is nothing I can do. She isn’t listening to my words. She is listening to what Roger is telling her about me. I can’t go in and physically restrain her. With my back injury I can’t even sit or stand for longer than 10 minutes. She hasn’t been like this since 2014. I am surprised to say the least.

When my husband comes and the ambulance comes she is still in her room screaming at me for being a “stupid B*tch” who “never gets anything right.” In the ambulance and at the hospital she tells the same story. Roger was being mean. He told her to hurt me. He told her to do these things. Imagine everyone’s surprise to learn that Roger is my deceased father. A man she never even met when he was alive.

She is admitted in-patient again, for safety, at the psychiatric hospital. I am tired. I am frustrated. I am mad. It’s not anger at my daughter. She can’t help the mental illness that is causing these auditory hallucinations. Somehow I am irrationally mad at my father. We always had a strained relationship, at best. Now, somehow, it seems he has managed to find a way to mess with my life from beyond the grave. Thanks a lot, Dad.

**Names have been changed to protect the privacy of those involved.

 

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mental illness, parenting

In-Patient For the Holiday

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I was so prepared this year. I was ready for anything. My husband and I had every therapeutic parenting technique we could think of at our disposal. Coping skills, body checks, sensory diet, check-ins, time-ins, you name it. We had our game faces on. Why? Because it was Christmas time. The worst time of year for many children from foster care. The worst time of year for our daughter.

We were so determined.We had it all figured out. We were on fire with new and wonderful connected parenting skills. I was even feeling a bit cocky, and posting things like, “Looking forward to our first Christmas with no in-patient stays!” on my parenting group. I was so very prepared this year. I was so very wrong.

Here is the hard truth about raising children with trauma and mental health concerns. Sometimes, it all goes wrong. Sometimes bad things happen anyway.  For several months we were working closely with Mary’s trauma team to adjust/change medications, increase therapy sessions, work on therapeutic techniques, etc.

Mary would be laughing one minute, then crying, then screaming. She claimed to hear what other people were thinking. She was lying more often, which is a pretty strong indicator of feeling deep anxiety and fear. Her emotions were spinning around faster than a tilt-a-whirl at the carnival.  She began telling us that she “felt like she was in a different world” at school. She heard voices that told her to hurt me and she didn’t want to. Welcome to the Christmas season.

Luke and I had contingency plans. We kept to a very regimented schedule, with no huge changes in the day to day routines. In order to alleviate anxiety we lightened the mood by having theme nights. One day the children came home and did their homework in a parisian cafe, while drinking “coffee” (mocha-flavored hot cocoa.) We all spoke in french accents while doing math.

Another night, our son yelled, “I wish everyone would stop talking to me.” So we did. We all sang our feelings rock-opera style. For an entire night. He had an air guitar solo, which he totally rocked, and Mary added some dance moves. I couldn’t talk the next day but he had gone from shouting to singing and laughing hysterically. We were having fun.

When Mary came home crying hysterically and told us she didn’t know where her sad feeling was coming from, we rolled with it. We set her up with sensory coping skills in her safe place. I stayed close until she was calm. Then my husband and I snuck into the kitchen to apply fake mustaches, turn on Frank Sinatra, and invite the children to a pasta dinner in our “Italian Bistro.” With accents, of course!

Typically, our daughter’s intense feelings can be acknowledged, named, and coped with. Mindfulness techniques and sensory tools work well for her. Then, as we lighten the mood and get playful, she can come back from the edge and her emotion will flip. It just isn’t always enough.

She began to rage on the evening of the 23rd and continued into the next morning. She claimed she could see people from her past that no one else could see. She screamed, she kicked, she beat her door. She writhed on the floor and yelled at us. She spoke to people that only she could hear. She lifted up her queen-sized bed and dumped it. She smashed everything in her room, or threw it.

All that work, all those skills, and she still had to go in-patient to be kept safe. She went into the psychiatric hospital the 24th and came home on the 26th. We are now referred back to a partial hospitalization program and Intensive In-home Psychiatric Child Services for her. We’ve done these a million times, rinse-repeat. It seems like starting over.

In the end I realize one thing. Our daughter isn’t a renovation project. We will never “fix” her or “cure” her. Mary is perfect because she is Mary. We want to help her heal but we also just want to be her parents.

When she grows up she won’t look back and remember magical parents that swooped in with all the answers and saved her. She will remember parents who cared. Parents who did the one thing that I believe really helped her. Parents that stayed with her. And if I’m being honest, I really hope she remembers the mustaches.

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**Names have been changed to protect the privacy of those involved.

 

 

 

 

 

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