Four

Four days left until Hope's intensive. Yesterday was not good with Hope. The Dad did not want to put her in respite last night, so she is at work with him today. My body simply can't take getting beat up any more. At six, I don't think she understands what an intensive is, but she does understand that we will be seeing Miss Cheryl everyday we are in Pennsylvania and is terrified. I assured her both The Dad and I would be with her every minute. Her behavior is screaming out her terror. Please pray for us.

Trauma Sucks

Hope wigged out last night. As directed by waiver worker, we called 911 and the crises person . Crisis person is 2+ hours away, a policemen and 2 EMTs show up. Hope stops throwing furniture and starts screaming in terror. Joe went to the hospital with her in the ambulance. I  spent 30 minutes tapping GB back to this planet.  My oldest RAD (26) took the opportunity to tell me I should be happy because this is what I have been waiting for. 

Trauma sucks. RAD sucks. I can't sleep.

Drawing Lines

  Hope woke up this morning snarly. The Dad helped her pick out clothes just before he left. Unfortunately, when Hope put on the skirt, it was much too short.    When I told Hope she had to change it, she slapped me. I took her down on the bed and did my best to keep from getting hurt. She was trying to claw and headbutt me and had some success. When she bared her teeth to bite, I reminded her I would call the police and the police would take her to the hospital. She closed her mouth and went back to clawing and kicking. Twice more she bared her teeth and each time, I reminded her what would happen the next time she bit. After a while, I told her she could call The Dad when she calmed down. The tantrum stopped immediately.       

I realize this was only the morning. I count it a victory that Hope chose not to cross that line.                                                                     

How We Use DAY

We no longer accept DAY in our house. The acronym stands for: Defiance Aggression Yelling. I point out the behavior to them, using which ever word applies, and give them a do-over. If the do over works, fine. If not they owe time. They have to sit quietly for eight minutes. They can't get up or make noise or their time starts over. Ugly, nasty faces are allowed however. As an incentive to get the time done, doing it well the first time  can result in shorter time. If Hope does her time right the first time, I let her up in four minutes. There is a fifteen minute window of time do to your time right.


If the child chooses not to complete their time in fifteen minutes, then a DO is added. Once we have a DO,  privileges are suspended until the  DO is done. Of, course, the DO can't even be discussed until the time is done. You have control over the DO. You can ask them for their suggestions. You  can just assign one. It can be as simple as a hug, or as difficult as picking up all the sticks in the yard (we have a big yard, with lots of sticks). I have been basing the DO on how much time and energy it cost me to get through their time: If it took twenty minutes to get the time done, the DO might be a hug along with an apology. If it took a ninety minute rage before they got their time done, it might be picking up the sticks or cleaning the playroom by themselves- both big jobs. You also control what privileges are suspended, again depending on how much time and energy they have taken from you. It might just be TV, it might be all electronics. Your choice.

The idea behind using DAY is to build your relationship with your child and make it stronger. It won't work if one of the parents are not holding themselves accountable for DAY. If I yell at a child, I need to apologize and repair my relationship. My goal is to remove most of the Defiance Aggression Yelling from our family life. That will allow us to focus more on building relationships.

Back in the Thick of It

Hope raged twice yesterday when the Dad wasn't home. I didn't lose it, although I thought about it. Thankfully, GB earned her dollar and stayed out of the room. Hope stayed together enough in the afternoon to have a play date with the brother of one of GB's friends. It worked out well because the boy Hope was playing with has a PCA  all day Saturdays and their were three adults supervising four children.


This morning, Hope raged before we even got downstairs because there were no clean socks in her drawer. She knocked over a table and a chair, scratched, punched and hit me. She started screaming "I want Daddy" and something broke inside me. The Dad came and I told him to leave, he was not involved in this incident. It took until 11:30 before Hope gave up on waiting for Daddy. She finally calmed down. We cuddled and processed where we started (lack of socks) , result (2 1/2 hour meltdown), and consequence (She has to stay within three feet of me all day). She picked up the things she knocked over and threw. Then I let her cuddle her Daddy. She is now playing quietly with her doll at my feet.


Tomorrow, I will tackle SPOA again. I have no choice.

Mid-Day Report

It has been a whole day of just Hope and I. Nobody to triangulate, no play options but me. We started cleaning the play kitchen after breakfast and found all the dishes and pots had been smeared with Vasoline. I gave myself a 15 minute time out and a cup of tea and then the two of us carried them to the real kitchen to clean up.


We have read books, cuddled, colored, emptied the dish washer and tried to hoop. Hope is practicing listening the first time, with swimming tomorrow dangling as the reward. 


It is much easier to live with Hope when it is just the two of us!

Our Star, Today....SPOA!

SPOA stands for Single Point of Access. In New York, it is the only way to get mental health care beyond once a week therapy.  Hope's therapists filled out a SPOA application last week. I took it home, read it and sent it to the proper office. Yesterday I received a call from the SPOA lady, who said I needed an axis four diagnosis and a GAF. A GAF is a number that tells you a child's Generalized Assessment of Functioning. I needed this number to get GB a medicaid waiver. Her GAF was a 68. Her socialization skills were not age appropriate and her self care skills were behind, too. Hope's GAF was a 48. This score is apparently low enough to get her an RCT placement. We don't want an RTC placement- The Dad and  I are convinced that if we sent Hope any where, we would lose what chance we had of her healing. I do believe she needs more support services.


I am still sleeping better with the alarm on Hope's door set.

Reentry

Enchanted Suites Villa: Photo by Carmen Miranda

GB had a smooth reentry. Hope... not so much. Yesterday was therapy Tuesday and Hope was yelling and crying before she got to the door. It lasted right through bedtime. Today Hope came off the bus the same way. It lasted until I put her to bed at 6 pm. I received an email from her teacher saying Hope was caught stealing another students ring. RAD kids always seem to make you pay for anytime you are away.


My time in Orlando was worth so much, Hope's ramped up behaviors are no more than a blip on the radar screen.

What Medication Can and Can't Do

Hope has now had seven doses (very low- 2.5 mg) of Abilify. In that time she has had just one rage. Huge improvement! She is doing a better job of completing her work and following rules in school. However, she still has RAD. 


The alarm to her door has not been installed yet. Earlier in the week, she got into GB's nail polish one day. Another day she brought somebody's make-up home from school. This morning she came out of her bedroom completely dressed, with her coat on. Ummm, her coat doesn't belong upstairs. I check her pockets. A single key, a ring with five keys, an antique broach. The broach, I think, was my MIL's. I am clueless as to where the keys came from. We went downstairs for breakfast. Hope refused to take her coat off. I fed the girls and they gathered their stuff for the bus. Hope was still acting strangely. I told her to take her coat off and gave her a coat with no pockets. She started crying and crossed her arms. I sent GB to wait at the bottom of the driveway for the bus. Hope and I were stuck. I very quietly told Hope if she missed the bus, nobody would be driving her to school. I waited. After minutes had passed, Hope reluctantly took off her jacket. I instantly saw the problem. Hope was wearing yesterday's shirt, complete with last night's dinner on it. I told her to change her shirt and the tears started again. She said that this was the only pretty shirt left in her draw. It was time for the bus and I pointed to the clock. We went to her room and I choose a shirt and told her to put it on. She then put on the coat without pockets and as we went out the back door, the bus stopped at the end of the driveway.


I am grateful that I didn't have to restrain Hope this morning. I am tired of every little thing being a hassle.

A Little Prayer Wouldn't Hurt...

Tomorrow is Hope's our big day. We see the pediatric cardiologist and hopefully get Hope cleared for medication. Please keep us in your prayers and thoughts... we truly need it.


Hope now has her own bedroom and the alarms are scheduled to be delivered Thursday. The therapist is talking about day treatment for Hope and wants to fill out a SPOA. I thought that was only for RTCs but apparently I am wrong.

Week Eight Begins

We started week eight of Hope's total meltdowns. Yesterday she went for a drink in school- a journey of approximately 20 feet. One of the aides saw Hope turn and start back. When she looked again, Hope was gone. Ten minutes of frantic searching later, she was found hiding in a first grade closet, on a different corridor. She lost half of her Valentine Day Activities and refused to do anything else. She came home agitated and oppositional.  We topped her day off with Therapy Tuesday, which pushed her over the cliff. She stopped trying and just fought. This morning, I insisted on strong sitting before breakfast. It took her twenty minutes to decide to cooperate, which left her less than 10 minutes to eat. She refused to carry her book bag to the bus. I handed it to the bus driver. She refused to take her book bag off the bus. GB delivered it to her classroom.


It is 10 am and I already have my first three emails about Hope today. She is defiant and oppositional and has already spit on somebody. This afternoon, Hope and I will practice following basic commands, such as stop, wait, sit, and quiet. I think we may be approaching rock bottom. It would be nice to see a little progress. 

Patience

pa·tience/ˈpāSHəns/

Noun:

The capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset.

I have always been considered a patient person. I was patient with family number one. I was patient with mentally ill family. I was patient with teenagers no one else would take. I was patient with GB, who came to me as an infant shorty before my 46th birthday. I was patient with my Head Start kids while working as a psychologist. I was sure, if nothing else, I had patience mastered. Then came Hope.


I looked up the definition of patience this morning. "accept or tolerate delay, trouble, or suffering". I have that part down. "without getting angry or upset.". Ahhh. With Hope, that seems to be my downfall. Why?

I know part of it is because I don't have the energy I used to. I can't be up all night and function well the next day. I think part of it is Hope's last seven weeks of behavior that has gotten worse each week. I have had Radlets before. My oldest daughter has RAD. I have never had a RAD before that went seven weeks without a good day. Not.a.single.good.day. She never lets up. Not being able to medicate her because of heart issues means she is up until 10 or 11 every night. Each week, I think, *well , we've hit rock bottom*. Each week she has proven me wrong. I get angry. I get upset.


This week I am going to try to be Zen. I am going into this week with no expectations. Maybe I will do better.

A New Day

I am writing this morning BEFORE Hope wakes up. This is probably the clearest and most positive my mind will be today.


We are still doing strong sitting before meals and snacks. Yesterday, for the first time, Hope told me she was going to hurt me in the middle of the night, while I sleep. I assured her that, while she may be angry and want to, I wasn't going to let that happen.


I am making sure Hope and I get regular skin to  skin time, in spite of her almost constant blow ups.


I am still fighting with St. Peter's Hospital to get the Holter monitor results. You would think HIPPA laws were designed to keep information away from mothers... at least St. Peter's seems to think so.


GB is showing signs of extreme stress- constant tears, often about nothing. We will get Hope in her own room, hopefully this Sunday.


As soon as I get the Holter monitor results, I have Abilify in the house to start Hope on. I was leaning towards Seroquel, but the real (read not school) psychiatrist wants to try Abilify first since it typically has fewer side effects.


Exactly three weeks from this moment, I will be on a plane to Orlando. I can't imagine The Dad soloing for 4 days with Hope the way she is. So much anger in such a small package.

Double Therapy Tuesday

Hope had two therapy appointments yesterday. Double the fun. The Dad and went to the school in the morning and spent 90 minutes with her therapist. After sharing updates (no surprises), the therapist called Hope down. Hope spent about 30 minutes wavering between the behavior of an 18 month old and that of a three year old. She  crawled on the floor, used a baby voice, with immature language, had no attention span,  and less frustration tolerance.We are seeing this A LOT. It was a relief when it was time for her to go to lunch. The therapist had no ideas, no suggestions.


Last night was regular Therapy Tuesday. Hope raged the entire time GB was in with the therapist. When it was her turn, she refused to go in. Eventually, the Dad gave her no choice. Orlando and my Trauma Mamas are 3 weeks and 2 days away. I can't wait.

Through the Rage

Hope came home from school yesterday surly. I gave her a snack and afterwards told her it was homework time. She responded by kicking me, with her shoes on, hard. I immediately took her to the floor and restrained her. I.am.NOT.getting.beat.up.any.more. 

Hope was prone, I was on my side. I had Hope's arms crossed over her head. I took her shoes off. All normal stuff. She tried to head butt me, and I put my cheek in the hollow of her neck so that she couldn't. Skin to skin contact. Hope struggled a little less. I realized I had enough movement left in my left index finger to reach Hope's cheek. I started softly stroking it. I used no words, just touch.  After fifteen minutes of screaming, threatening, and trying to scratch me, she went limp. I kept stroking her cheek. Time passed. When I felt safe enough to let Hope up, the rage was gone. 

The games were still there. The homework was done incorrectly. She tried her usual bag of RAD tricks. BUT... the rage was gone and for that I am thankful.

Strong Sitting

Strong sitting is a technique for helping RADlets heal that I first read about in a Nancy Thomas book. I modified this particular technique so that it worked for us.


Hope has a 24" vinyl mat that she sits on. It is portable and can go anywhere with us. We have used it as a thinking spot, a cool off spot, and a keep Hope contained spot. It worked most of the time. However, when a child has already passed the point of no return, getting them to sit and a mat and collect themselves isn't going to happen very likely. That is when I had the idea to use Hope's mat for strong sitting. For six minutes (one minute per year) Hope is strong sitting on her mat before each meal.


This is what we do for strong sitting:

• Hope sits on the center of the mat, on her bottom.
• Legs are criss-cross applesauce.
• Her back is straight, hands rest on her knees, relaxed.
• She is encouraged to focus on the good choices she is going to make.

The meal is waiting for her when she has completed her strong sitting.


I am hoping that regular practice will not only let Hope reset several times a day, but make the mat a place Hope  associates with calm control.

Has anybody else used a version of strong sitting?

It's All Our Fault...

Hope is in the midst of a major regression. We have gone back to the basics. Tomorrow's post is on strong sitting. A couple of weeks ago, The Dad had written to the Texas parents, asking if, for Hope's sake, they would be willing to talk about the trauma Hope experienced. Today he got a response. They said they would think and pray about the answer to the Dad's question. 


More interestingly, part of their email read:

                   Sadly, we believe that her feelings of abandonment are heightened because of her inability to remain in contact with us.  The very thing we felt so strongly about has now happened, without Hope's control or ours.  In an ideal situation, both families agree to communicate and embrace the pain and loss, in order to help the child and family come to a place of restoration, healing and forgiveness.

Despite every person involved with Hope's mental health have advised against any contact at this point, the Texas parents remain stuck where they are. I have known disruptions where on going contact works and is even desirable. They are not her birth family, but they are the only family she ever had.  My RADling is currently stuck in her behavior, but slowly she is starting to share what happened in Texas. As long as she is slowly sharing the trauma, I am not inclined to allow contact with Texas until I understand what went wrong.

Tired of Being a Punching Bag

Hope came home from school scowling yesterday. I took her book bag to see how her day had gone, and was sidetracked by the stuff in it that wasn't hers. Most of it was meaningless stuff- hand lotion, Ben-gay, a barrette. Then I saw GB's charm bracelet from my DIL. It is important to GB and Hope knows that. Maybe Hope figured the best defense was a good offense. Whatever her reasoning, she went from arms crossed to physical in a tenth of a second. She did her best to beat the crap out of me and called me curse words I didn't know she knew. I restrained her. Twice she seemed to calm down. Both times, as soon as I let go of her hands, she was at it again. After the second time, I told her I would not give her another chance until The Dad was home. When he came home, he took over the restraint. It took him 45 minutes before she was in control.


We still do not have the results back from the Holter monitor, so we still can't put her on medication. I am still struggling with viral pneumonia and I didn't want to get up this morning.

Psychiatrist and Hope

Hope and GB had an appointment with the psychiatrist this morning. GB went first and had a normal visit. Then it was Hope's turn. Hope behaved no differently in the doctor's office then she has anywhere else recently. The psychiatrist was very concerned. She mentioned total lack of empathy, dangerous behaviors, and no desire to please anybody at this point. For the first time since Hope came home, the psychiatrist wants her back in two weeks. I am glad she sees what I see- sometimes I worry that I am over reacting. I mentioned this to the doctor and she told me she saw these things during Hope's time in her office. I am also scared. The psychiatrist said our first priority has to be getting Hope into a room, away from GB. I am looking for a contractor to make necessary modifications.

Nightmares

Hope has been having nightmares that someone comes and takes her away because she "is bad all the time". We repeat our mantra regularly. "You are ours. No matter what you do, you are ours. You are here forever". Her behavior gets worse instead of better. At this point, we are just hanging on for the ride. Sometimes, there is nothing else to do.