Today’s appointment with Hope’s new therapist never happened. It was on her calender for ten this morning. It was on my calender for one this afternoon. It was rescheduled for a week from Monday. I am so disappointed. I keep reminding myself that anybody can do anything for short periods of time. Meanwhile, RAD dances on.
Hope Has had another difficult week. It has been two months since The Dad has been her primary caregiver. She has good moments, but overall every day is a struggle. School has also been a struggle, with Hope escalating to physical aggression. We are on our way to Philadelphia. Tonight, we visit friends. Tomorrow, we see the attachment therapist.
Hope’s hair was done in corn rows (not by me). She loves them, especially the pearly pink beads. I hope they last more than three days!
Hope came home from respite yesterday afternoon. She is still physical, defiant, and has added running down the block to her repertoire. The crisis worker told Hope the next unsafe thing she does, it is 911. I know it is not the first time Hope has heard this. I fed her and put her to bed with the alarm on. Rinse, repeat, rinse, repeat ad nausam. Another meeting this afternoon.
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.
It’s Friday and Hope’s horrendous week ended with a bang. Hope had to stay in her classroom and work while her class went ice skating because of her poor school behavior this week. One of the aides stayed with her. When the class returned, Hope’s work was nowhere to be found. Ms. V.Y. Teacher looked for it in her desk. It wasn’t there, but the desk was filled with items Hope had stolen from teachers, aides, classmates and GB over a period of time. The school is now
begging requesting our input on how to deal with Hope. They are no longer looking at us as if we are crazy. I hope this is just Christmas RADness and Hope will settle some in the new year.
Hope’s day at school never got better yesterday. As a result, she is staying at the school while the rest of her class goes food shopping to get what they need to make pumpkin pie. With any of my other kids, this consequence probably would have set off my Mama Bear. I didn’t even flinch. After all, I won’t take Hope to a food store at the moment. I can’t expect her teacher to.
Hope raged about homework last night. Her homework was not complete when The Dad was ready to shop and go to dinner, so only GB got to go with him. A happy GB, an unhappy Hope. I used this time to gently talk to Hope about the last few days. After she blamed the usual list of suspects (with me at the top), she got quiet. After a few minutes, I asked her again why life had been so hard recently. A quiet “I don’t know” was her only answer.
Most of her blood work came back yesterday. Her prolactin and a liver enzyme were both elevated. We have started weaning her off the Risperidal. We are not going to try something new until we see how she looks without any medication. The lab did not do the heavy metal test requested. We need to put her (and us) through another blood draw.
Because of the erratic heart rate, we will need to do a 24 hour EKG. I can not imagine trying to keep the leads in place for 24 hours when Hope is raging regularly. If anybody has some spare miracles to send my way, I would appreciate it.
Hope has not raged since I dragged the papoose board out. The next morning I told Hope I would not be restraining her any more. I told her if she tried to hurt herself or anyone else, I would just get the papoose board out and we would use it to keep everybody safe.
Hope has not had a good day since. Interestingly enough, she also hasn’t raged. She has been openly defiant, cries frequently, and yells and threatens on a regular basis. The “poor me”s are running rampant. She has not crossed the line to a rage. Obviously, she has more control than I thought.
Our new “normal” with Hope hasn’t been easy. In the last 24 hours hours, Hope has out done herself. She has pinched and kicked me, tried to poke my eye out with a pencil and bit me while I was confiscating the pencil. I received an email from her teacher saying her behavior has been difficult for the last month. She tried ignoring the behavior and depriving Hope of her end of the day prize. It didn’t work. (Mind you, Hope is in a class run by a respected children psychiatric hospital). Today Hope gave everyone mean and nasty looks, stuck out her tongue at an adult, rolled her eyes at everyone, crumbled up her seat work, announced that she was not doing any work and followed through with that. The teacher EVEN tried putting her in the timeout room for 5 minutes (Gasp!). She wants to meet with us.
After school yesterday, we went to therapy, like we always do on Tuesdays. Hope went first, then GB. The therapist never came out to get Hope for their sibling session. Afterward, the therapist told the Dad that she chose not to have the sibling session because she didn’t want to subject GB to Hope’s mean and nasty behavior. The therapist was visibly shaken.
I spoke with the MHA about respite for Hope. They are concerned that none of their regular respite workers would be able to handle Hope and keep her and everyone else safe. They want us to consider their more intensive program, aimed at children in danger of being placed. I deferred the rest of the conversation until after we see the psychiatrist on Monday.
As for the highlight of my day, I got an email that the 5 point harness is in the mail! God is good! (And so are friends!)
Hope has been here almost 6 months. I think the honeymoon (if you can call biting, scratching and screaming a honeymoon) is over. The physical aggression has greatly decreased. Most of her aggression now is when she thinks she won’t get caught. She has her real smile, which is pure pleasure to see, and she has her I-am-so-cute RAD smile she wears as defense most of the time. Her triangulation is starting to develop major league muscles, catching her therapist one session. Her favorite phrase, when she doesn’t get exactly what she wants is “you don’t love me”. The stomping of feet, crossing of arms, and the death ray look has almost moved in with us, as opposed to being a frequent visitor. She has suddenly become incapable of doing her pre-k homework. She is furious when I tell her HW is her problem, not mine. She tries playing the I can’t do it card, but since all it consists of is tracing her name, she hasn’t found any sympathy. Most times she earns a consequence, her reaction is ” I want to call my Texas family”. I tell her she may want to, but it isn’t happening right now. I have had the bus company put them in separate seats, because Hope was poking GB, and GB was getting in trouble for picking on “poor Hope”. When Hope complains GB did something to her, the first thing I ask her is what she did to GB. Usually, she tells me I don’t love her and walks away, arms folded. GB will tell me “I slugged her because she scratched my face, twisted my arm, dug her nails into my neck.” After the obligatory “In this house we keep our hands to ourselves”, I finally got smart and made Hope’s world smaller again. She has to be with me all the time, at least until she settles down again; a day, a week, a month, whatever. Winter clothes took care of (most) of the biting. Now I have to figure out a defense against spitting.
Today is the sixth consecutive day the girls have been home. Good things happened anyway. The Dad and I went to speak with the psychiatrist(word is too long. That’s why I usually call them shrinks) who did the psychiatric evaluation on Hope. It is now official- Hope is RAD. She may also be ADHD. We will be weaning her off the Risperdal over the next three months starting with the morning dose. Good luck Mrs. VY Teacher. After she is off the Risperdal, we will have her evaluated for ADHD. Doesn’t sound like something to celebrate. Ah, but there is more. Hope’s VCS (Very Competent Shrink) has agreed to treat GB, so instead of a 5 1/2 hour round trip to Manhattan, it will be a 2 hour round trip to the little city. She also said that the next generation of Risperdal is now available in a child’s dose. It doesn’t have the weight gain or the prolactin problems Risperdal does. YIPEEEE! She is sending me more information. I can actually dream of a stable GB again. Granted, she will still contend with FASD and ASD, but that will always be true. No more psychosis! If my body was working better, I would be dancing. Good thing this is a blog post- you can’t hear my tone deaf singing 🙂