GB is still dysregulated and manic. After trading a dozen emails back and forth, the psychiatrist and I agreed on a plan. I am not doing the happy dance. GB has been on every atypical antipsychotic currently available. The only two that stabilized her were risperdal and invega (A metabolite of risperdal). Unfortunately, Prolactin levels in the 40’s are not acceptable in an 8 year old girl. So we are left to try traditional anti psychotics. Tomorrow morning, GB starts on loxapine. It has black box warnings and we didn’t want to start her when we would have to rely on the school to monitor her.
Parenting special needs children is often like this- there is no good solution. You are stuck between a rock and a hard place and have to chose between two lousy options- in this case, no treatment or risky nasty side effects. I made my choice and I am praying that God will wrap His arms around her.
I have been taking the 14 Day Challenge over at Pearls of Price. The object is to confine yourself to positive or neutral words, and when you can’t manage that, be silent. And do this for 14 consecutive days. I thought it would be difficult. I am finding it impossible. I have yet to start Day 4!
Even though I can’t see myself actually making 14 consecutive days, I have benefited from trying to do so. The girls have also benefited. Being in the challenge has made me monitor closely my attitude and words. After all, attitude is the birthing ground for our words anyway. Hope has responded well to my silence. There have been many situation where I can’t think of anything positive or neutral to say. For example, Hope was sitting on her mat screaming and sobbing that she was in control. The only reaction I thought of was to laugh. Obviously not positive or even neutral. So I said ABSOLUTELY nothing- not even a mutter. After almost an hour , Hope finally got quiet. I waited five minutes, then went to her and told her that this is what control looked like, gave her a hug, and let her up. I don’t know if she got the message on control, but I do know my blood pressure didn’t shoot up and I didn’t contribute to her meltdown.
On the other hand, Hope complains and whines constantly. When I try silence, she just ups the ante and and tells me I don’t love her or like her. Eventually, what I think of as her “poor Hope game” beats my silence and I tell her to take “poor Hope” into another room. There is another blown day. It supports my attitude is the birthing ground of words theory. Obviously, I need to stop thinking of it as the “poor Hope game”when she starts whining and complaining. I am working on it.
I don’t know that I will ever make 14 days straight, but just the effort is improving the quality of life around here. I will update again.
|Mom’s 70th Birthday, her last
Today, my Mom would have been 74. Today, my brother would have been 48.
A lot of who I am came from my mother. I still miss her. If you still have your Mom, please give her a hug from me.
GB says Grandma at the Beach is walking the beaches in heaven, waiting for us.
Despite some current difficulties, I have many things to be grateful for.
* The Dad is back from Michigan. His report: J looks good and outside of school, X is doing well.
* We are having car problems, but we have the fiscal resources to solve them. Annoying yes, but it could be worse.
* GB is manic at the moment, but her psychiatrist answered my email in less than thirty minutes.
* Things aren’t going well with the “outlaws” (Booboo’s family), but MK is getting more reasonable and showing maturity in dealing with the situation.
* My grandson has started bringing me books, saying “read” and climbing into my lap.
* It is cold outside, but warm inside.
* When I look at the hard stuff, I can say “This, too, will pass” and believe it.
* I am never alone.
Bipolar is back. Not that it was ever really gone, but the Invega controlled the bipolar so well, the bipolar rarely made the radar screen. GB has only one volume at the moment- loudest. The pressured speech makes it hard to understand what she is trying to say. She is only completing one thought in four. The rest gets lost in the whirlwind of mania. She has no attention span. My biggest dread is that as the mania cycles higher and higher, she is more likely to experience psychotic breaks. Please pray for her… she doesn’t understand what is happening and is scared.
Hope’s birthday party was today. GB has been fragile since we cut pack the Invega. Only two of the nine other kids in Hope’s class came. GB’s NT friends filled in the gap, but when the party was over, Hope wanted to know why her other classmates weren’t there. I told her I didn’t know, because I couldn’t tell her she has no friends because she has no social skills. Not only would that have been negative, but it probably would have ignited a meltdown. I need to get Hope’s IEP out and write some smart goals for social skills before the next CSE meeting. It was a strange party… the birthday girl didn’t interact with most of her guests.
This was one of the few relaxed moments GB has had in the last couple of days. Pressured speech, lots of tears. I am afraid the 1/2 dose of Invega is not holding her. The place she is in doesn’t allow me to be silent when I can’t be nice. I am still making Day 2, but I think my niceness is coming from God. I know it is not in me.
The Dad has been gone 36 hours. I successfully navigated Day 1 all over again. The girls had a half day of school. We went out to lunch, to the party store, and made goody bags. Hope’s 6th birthday party is Saturday. The Dad booked The Little Gym Saturday at 2:30, then bought a plane ticket to Michigan. I haven’t spoken to him without the girls around, so I am not sure how Michigan is going.
After doing goody bags, the girls tried to watch a movie, but GB ended up in tears multiple times. I turned it off and made each of them unhappy. They recouped in time for the three of us to make pizza together for dinner. They called The Dad and now they are in bed- GB asleep, Hope talking to herself about how mean I am. I am not saying a word!
The Dad left this morning. He will be in Michigan for 6 days. Naturally, Hope melted down this morning. Only I didn’t see it coming. She was great until 5 minutes before the bus came. We gathered up school stuff and I told both girls to get their jackets. It was raining. Hope told me she didn’t need to get her jacket. Again I asked her to get her jacket, in a consciously neutral voice. She started screaming and crying that I hated her and she didn’t need a jacket. She hit GB and I lost my attitude. I was very negative when I told her to put her coat on NOW. She walked out into the rain without a coat. The bus came and both girls are gone- GB dry, Hope wet. The consequences of the morning? Hope has no TV today and I am back at Day One tomorrow. Sigh.
We took the girls to see the psychiatrist today. Both girls had high prolactin levels, but GB’s was through the roof again. We had to cut her Invega dose in half and now we pray that when it is tested again in three weeks, it will have gone down. If it doesn’t, she has to come off it. I am not sure that a 1/2 dose will maintain her stability. I dread having to take her off it completely.
Hope now carries a diagnosis of PTSD, along with RAD. The therapist at school is focusing on her trauma during their sessions. The outside therapist is not. The shrink told me today that I had to make sure that the outside therapist refocuses her therapy with Hope and keeps in contact with the school therapist. She said ideally we would just use the school therapist, but since this is the third school therapist in the year we have had Hope, we would need to keep the outside therapist for consistency.
So far today, I am doing well with my attitude Challenge. This afternoon we have to take the hour ride back to Little City because it is Therapy Tuesday. Hope struggles with therapy. I am going to be very mindful of my attitude.