So, as you can tell, St. Patrick's Day was absolutely magical! The leprechaun left the girls jump ropes, facial hair, and necklaces. They were delighted.
The rest of the week was an interesting one. Safi had some rough patches as school. Frustratingly, I had to find out about them from her after her teacher said she had a great day, no less. I had to text her teacher and remind her that the deal made in the IEP was for unbiased data collection that every incident, success or upset, must be equally documented. She agreed and then told me that Safi had actually cried twice that day, not just the one time that Safi shared with me! I was stunned. I mean, I had talked to the teacher in face to face and she had told me what a great day Safi had had. So strange. There were other days in the week where she had told me Safi struggled, but this particular day she said it was great. Terrifies me to think that my child crying has become so commonplace that it doesn't constitute a rough day. Nonetheless, she's enjoying her super cool jump rope and is practicing non stop...with all the bruises to show it, as this is no simple task for a kid who's motor dyspraxic. But she's determined and she'll do it...because SHE knows she will. Total rock star.
Nixi. Rough week culminating in a massive meltdown Wednesday afternoon before school requiring me to put her in her bedroom for a half and hour purely for safety reasons. She was absolutely out of control. She got it together, we moved on and forward and she had a great day at school. There was a substitute teacher, which always throws things off a bit. Later, at dance class, she had a command hallucination and she kicked a boy in class. Immediately after the act she ran to a corner of the dance room, faced a wall, and cried hysterically. They had to bring me into the room to gather her. On the ride home she lost it again, crying "Mama, I'm SO SORRY!!!". The "people said he had to go." Horribly sad and scary. She has command hallucinations from what I can figure daily and very rarely acts out on them and never before with a peer. That night I increased her Risperdal by .25mg for a total of 2.50mg. The following day after bath she said "I will never drink Peanut". Peanut is the new dog their dad got a week ago. I said, "How would you drink Peanut?"....she dropped into a weeping ball on the floor, naked, "I WON'T!". Friday she told she she'll never cook me. Imagine what its like to be nearly 5 yrs old and having voices in your head talk to you about cooking people. I still cannot imagine the horrors of what she was told in relation to drinking a dog. I'm often asked by people if we watch scary movies or TV shows, etc. How else on earth could a child of her age come up with things like cooking people, cutting me into little pieces, setting me on fire, etc. While I have no proof that this is the case, I believe that these ideas are generated by what in any other circumstance would be normal, everyday parenting of a small child. When children are little we focus on praise and safety. "Don't touch the stove because its hot and it will burn you and hurt you very badly"..."We don't touch knives or scissors because they can cut you and you will bleed and it will hurt", etc. When Nixi is angry and floridly psychotic and threatening me, she uses those phrases almost verbatim, "I'm going to fire you and its going to hurt you do bad....I'm going to cut you into little pieces and you're going to bleed", etc. These practical warnings, and to an extent fears, that we present our children with in a very reasonable manner to keep them safe, in the mind of a mentally ill child can become interwoven into their illness. This has to be it. We don't watch scary movies or TV, we don't talk about macabre things. But I have watched thousands of day to day things from our "real world" get weaved into the tapestry of her illness. This makes sense to me in a situation that is absolutely devoid of sense and pure madness. Its horribly sad. She's a kid. This has been her life since birth, as she says the "people" have always been there. I had documented her responding to visual hallucinations as far back as 2012, though I didn't attribute it to mental illness. And if we think back on it, this is clearly why one case worker who had run a baby development center had described as "the most terrified baby I've ever seen", way back when she was under a year old. Nixi was born with some of the switches tripped already. The wheels to her illness already there, our home and lifestyle, the stress from Safi's struggles at that time, genetic predisposition...a slight incline, with the wheels ever so slightly inching forward. September 5th, 2013 was the day the the incline became a steep ravine and the wheels picked up speed. Now she lives on the tracks of a roller coaster full of dips, turns, and lots of peaks with chill inducing valleys...the wheels never stop rolling, they just slow at a peak then pick up speed again. That's the best we can do for now, the best meds can do...the best I can do.
The girls had a tremendous weekend with dad. I bought the three of them tickets to a Little Mermaid "Under the Sea" party at the local theater and boy did they ever have a great time. They got fish toys signed by the main characters, learned how to dance with the characters and got their faces painted. Get this, Safi was the only child who got her whole faces painted to look like Ursula, the octopus villain. The woman explained to her that it was going to take a very long time and Safi sat through it like a champ. Afterwards the woman was telling Mike how amazing it was that she was able to sit for the whole thing and then Mike told her that she had Autism...the woman gave him a huge high five. Best. Day. EVER.
Sarah
No comments:
Post a Comment