MK took them of the bus and they didn’t make it inside for an hour!
|Ellie and Snow Baby|
|Mali and Snow Baby|
|Mali, Snow Baby, GB, and Hope|
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.
*** Orlando can not come soon enough ***
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.