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.
For over a month, I have been sharing my waterbed with The Dad, two Maine Coon cats, and an assortment of towels. I wrote about it here.Yesterday, The Dad put the new waterbed mattress together and filled it. I slept without towels and woke up dry. Life is good!
The kids spent three hours at Kid's Kingdom in the Little City. The Dad and I drove them, with MK, paid for their admission, and gave MK money for lunch. We picked them up three hours later and nobody wanted to leave.
We did this to manufacture time for The Dad and I to spend alone. We went out to lunch and then to couples counseling. Couples who raise special needs children have an extraordinarily high divorce rates. Throw a RADish or two in there, expert at pitting one parent against the other, and professional help can be a necessity, not a luxury. Divorced Trama Mama's aren't a rare breed and the norm for Trauma Mama's can be strained relations between them and their other half.
The Dad and I have been married a long time. We have even survived raising a RADish together. Surviving is not good enough. We are looking for more. I have not kept Hope's struggles a secret. Our life is never easy, but the last eight weeks had pushed us over the cliff. We were not in sync at all. Hence, couples counseling. We are working for our future. God has better things in store for us. We are looking forward to our future together and if we need help to get there, we get help.
We had our first snow day of the year today. It was more rain than snow so we needed inside activities. We broke out the craft kits and everybody was involved in their own way. MK and Mali were process oriented in making their dinosaur. GB was result based, wanting flowers for her "new" just her room. Hope spent a lot of time picking out her starting color (blue) and not much time painting. I was the designated photographer.
Hope has not raged today. There are still problems with sneakiness and manipulation, but it is noticeably better then it has been. Both girls are enjoying having their own room. I hope the door alarm shows up today!
* Hope saw the pediatric cardiologist yesterday, who said her arrhythmia was benign.
* I started her on 2.5 mg of Abilify last night.
* Hope is in her own room. The alarm is suppose to come today.
* Last night, Hope sneaked out of her room and got into nail polish. The Dad was furious. MK shrugged and asked him what he expected.
* GB has completed 6 hours of recreational reading to earn an amusement park ticket from school. * GB received another award from school. Last time it was for effort and this time it was for improvement. Her good year continues! * Hope's world has gradually expanded in the last 18 months. After Orlando, I plan on making it very small again, until she can handle it. * The first of three packages arrived for our waterbed mattress replacement. The other two are suppose to arrive today.
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.
I feel your pain when you worry about your child's future. I have been there. My oldest is 29 and I remember feeling sucker punched when they told me he was Bipolar I with psychotic features. I spent the next ten years trying to get him ready for the real world and making sure he ended up with that diploma which is so necessary to success.
I want you to know the future is not as scary as I feared and not as bright as I once hoped. My son can hold a job, is raising a family, and has been married for 4 years. He doesn't earn a lot of money and his family will only have the extras we choose to give them. He usually stays on his medication, except when he doesn't and has a regular therapist. He stays on the right side of the law. Sometimes he is even happy.
He still drags the weight of being bad and stupid around from his childhood. Mind you, he was never either.
If I had it to do over again (and I guess, in a way, I do with GB), instead of focusing so much on the future, I would stay in the moment. I would make sure my son had regular, if fleeting, moments of happiness. He had these moments and remembers them all. But these moments were incidental, things that happened while I was keeping my eyes on the future.I should have taken the time and intentionally made these moments.
My goals for GB and Hope are different. I work had to ensure GB is learning everything she is capable of learning, that she is aware of her progress, and also aware that she is accomplishing so much because of her effort.
I also monitor the good things in her life just as carefully. When she enjoys something, I make sure she notices it. We talk about possible activities, not only from the view point of will she enjoy them, but how those activities contribute to her happiness.
I am careful to acknowledge when things are hard but doable, and point out that her perseverance will enable her to accomplish things she never thought she could. I also keep my eyes open for situations in which she can't succeed, no matter how hard she tries, and either change the situation or get her out of it.
GB started on atypical anti-psychotics before her fourth birthday. She has always known they were to keep the psychosis away and each time she has had a psychotic break, afterwards we talk about her medication which is suppose to keep that from happening. We adjust the medication and we have months free of those breaks... and make sure GB is aware the change in medication helped. Psychotic breaks are as scary to her as they are to us. And she has some memory of each one.
My goals for Hope, who has no known biologically based problems are different. I pay very little attention at all to academics and focus on working through the trauma. Her RAD is severe and without enabling her to trust and attach, she has no future anyway.
You are a G.R.E.A.T. Trauma Mama. You are doing the best you can and that is enough. Leave the rest in God's hands. I admire and love you and am so glad you are my friend.
The girls have a four day weekend. Count'em... Saturday, Sunday, Monday, Tuesday. When it was GB and I, we would have planned activities scattered through out the time off. Hope's morning today was as bad as it has gotten. We are hoping to move her into her new bedroom tonight and that could help. Of course, there is always a chance that it could make it worse. I am going to try to stay in the moment and also to plan something for GB each day, even if it not with me. I have my big girl, Therapeutic Panties on and I will do my best. 86 hours of therapeutic parenting, straight, with no relief in sight. Sigh.
Valentine Day has passed, but Hope continues to escalate. Since Hope sabotaged the Holter monitor again, we see the pediatric cardiologist on Wednesday and pray that he will clear her for meds. The school keeps inquiring about meds.
I have an intake worker coming from an intensive keep-the-child-in-the -home-program, hopefully to give more support until we can somewhat stabilize Hope on meds. We are NOT contemplating an out of home placement for her. However, her behavior warrants it and we are getting services based on that. Having more support in the house while I am busy enjoying ORLANDO can't be a bad thing for The Dad.
In case I have given anybody the impression that I always know what to do, I want to state here; there are many times when I am just guessing or am too T.I.R.E.D to be therapeutic. Today might be one of those days. I will know when Hope and GB get off the bus at 3:30.
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.
Today is Valentines Day and both girls woke up excited. GB had picked out a heart dress that was perfect for today. When Hope saw her in it, the lip began to quiver. GB immediately offered to help Hope pick out more appropriate attire. It was fun to watch GB fuss over Hope.
GB baked cookies for her class last night and we drove the girls to school. Hope almost lost it this morning when she was told to pick up the first set of clothing she had on, but managed to pull it together.
It is a Therapy Tuesday so I wanted to post before the rest of the day happened and Hope's good morning was not the first thing on my mind. Hope went to school this morning expecting to do no work today and to have no homework tonight. I was unable to reset her expectations, so I am not sure how she will come home.
Three weeks from today I will wake up in Orlando. I know Orlando sounds like a vacation, with Disney World and Universal studios. It's not. During the first weekend in March, it transforms into something magical. It becomes an oasis of understanding and acceptance. It is the weekend of ETAAM. It is the weekend of my Trauma Mamas.
These people are my lifeline in my journey to heal Hope. All of my feelings, nice and not so nice, all my stories, are met with acceptance and love. I do not have to wear the dozens of masks I wear each day, just to survive. I don't have to keep my guard up, ever vigilant for an attack. I can wake up in the morning and know that I will not be attacked.
I went to Orlando last year, not really knowing what to expect. I had meet one of the people who were going to be there, once, for a couple of hours, over dinner. I knew a couple of other people through the internet. I hate crowds were I don't know anybody. That feeling lasted until I met up with Trauma Mamas at the airport. Trauma Mamas just get it. This weekend is for me. I will laugh and cry. I will live in the moment and just be.
When I come home, I will be refreshed and ready to pick up the battle again. I will know that my Trauma Mamas have my back. I will deal with the crazys that are inevitable on my return.
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.
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.
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.
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 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?
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 slowlysharing the trauma, I am not inclined to allow contact with Texas until I understand what went wrong.
I commissioned a quilt for MK from my friend Integrity Singer. It came today and is brilliantly made. MK loved it. Integrity Singer has more pictures of it on peace in puzzles . If you ever need a beautiful, practical gift, Integrity Singer might be able to dream up something as beautiful for you!
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.
Therapy Tuesday was better than last week. Hope's screaming stopped before 9 pm. Of course the last half of my preemptive plans never had a chance. On the way home from therapy we received a call from a very upset MK. She had picked up Mali from his father and there was something wrong with his arm. Since the Dad was driving, I talked MK to the emergency room. We went to the hospital and the Dad stayed with her and the baby. Mali had a dislocated elbow.
Hope was not happy. She started with the phony whine/cry and repeating over and over "I am not going to bed without Daddy". When we got home, I told her to get pjs on and that is when she went off for real. She tried to kick me until I got her up the stairs and into bed. The screaming in bed lasted over an hour.
I am thinking that we need to simplify and go back to the beginning. We need to practice basic commands and strong sitting. The TV is off until we master those skills (again). I am not sure when we lost them, but I need them back. Soon.