The Wednesday before the 4th of July we had a play date with the girls' friend Sophia at ImagineU interactive children's museum. You may recall we've been there before, actually our first play date with Sophia was there last December. It ended that time in a massive meltdown from both girls over a green dress up dress. Princess Tiana, Safi's favorite princess, wears a green dress...Nixi wasn't giving it up, it was horrible. So, this time we arrived a little early and the first thing Safi did was put on that green dress...
She was quite pleased with herself! Sophia arrived and the girls had a great time.
I've noticed for some time now that Nixi's got about an hour for unstructured activities before she starts to go south. One of the young men who's vlogs (video blog) I've been following gave an amazing description of what its like to have schizophrenia....where hallucinations and delusions, for him and perhaps most, seem to come from. He said that he and others he knows like him read too much into things, focus too long on irrelevant stimuli in their environment. For example, many of us can lay on our backs and look for shapes in the clouds. Maybe we see a dog, a dragon, a seahorse...then we move on. We are in control of these flights of fancy, we are choosing to expand our reality for a moment for our own personal enjoyment. Many people with schizophrenia are unable to do this because it is not volitional. This is called perseveration, to quite literally get stuck in a thought, mood, or experience well past its relevance and/or usefulness. If you recall, a major deficit in those with schizophrenia is the inability to selectively attend...or choose what in the environment should get the most attention. For example, most of us can tune out the noise of a fan in favor of attending to the voice of a teacher. We can walk through a supermarket and perhaps glance at the pattern on the floor but then we can go on our way and get our shopping done. We can take a walk with a friend and attend to the conversation regardless of the noise of traffic or nature. We can decide what is relevant stimuli and what is not depending on the situation. For many with schizophrenia this is not possible and so, the environment is constantly being misinterpreted. Here are a few concrete examples to really drive the point home....
The above shadow cast onto a garage door by a tree looks remarkably like a face.
Look closely at this tree and you will note that it looks like a woman.
Now, those of us not living with a serious mental illness such as schizophrenia can look at those pictures and enjoy how amazing nature, shadows, and the world around us can be. But for those like the young man I'm following and like Nixi, these things can be far more sinister. Imagine, just for a moment, if that shadow face began talking to you...or the tree woman began to move toward you. What if they were telepathically sending you messages of controlling your thoughts? Nixi experiences these types of things constantly. The home security system box in the master bedroom that always has been a huge point of fear for her. It constantly has small red lights at the top and a small green one in the middle. This box will forever be a red eyed monster. I've covered it to no avail...because it is still there and, for Nixi, it is a monster.
Clinically we call these illusions, or sensory distortions. They are different from hallucinations in that they are misinterpretations of true stimuli. Hallucinations are distortions that happen in the absence of stimuli. We have known that, for Nixi, its these constant misinterpretations of true stimuli that feed her delusions and some of her hallucinations. So, even the "real" world and true sounds, sights, sensations, etc., betray Nixi and others like her
Back to ImagineU. It was getting past the hour mark and Nixi was starting to get very irritable and testy. She began misinterpreting other's intentions and was becoming more and more paranoid. I gave the girls the countdown to prepare them for leaving and Nixi put on a dress up dress. That was fine, we had 5 minutes left. Suddenly, behind my back I hear her start to scream and as I turned my head and our eyes met I could see that she was in total fear and panic. I have no idea what tipped it off but she was screaming about people looking at her, a pretty common theme when she's stressed...cannot tolerate people looking at her. Their "looks" suddenly take on meanings like that they want to hurt her, hate her, are laughing at her, etc. She whizzed by me and I managed to get an arm around her waist. She fought me, screaming and crying, she fought me hard. She was no longer seeing people as people, only as potential threats and at that moment in time I was one of them. An elderly docent started coming towards us, as this was quite a scene. I evenly but firmly said, "We are not okay but we will be if you give us space." She continued to advance as Nixi was fighting me and I was becoming very aware that if my grasp slipped and someone touched her or got too close, she would hurt them. I repeated the mantra and the lady still advanced...clearly thinking this was maybe an Autism issue and suggesting an other area of the museum was quieter..but still physically advancing. I finally said, for the first time in a public place, "My daughter has a mental illness and I need you to move back NOW!" She did, and I never lost my grip on Nixi. It was so horribly sad, this weeping ball of a child in this big, lovely dress up gown finally looking at me and seeing me. Now it was her who had me in a death grip. I managed to get the dress off of her and gather Safi up and make it out to the car with them both. Luckily, or sadly, Safi is used to this by now so her enjoyment of the day wasn't tarnished. But my Nixi. It was the first time that I actually believed that if I hadn't had a physical grip on her and anyone would have touched her, looked at her, or approached her that she would have hurt someone. Granted, it would have been to protect herself, but it broke my heart and scared me simultaneously.
I do not know what will happen next year in school if she gets in one of these states. The teacher and aid are used to dealing with children with autism who at times can be quite physical so I'm fairly certain they can keep everyone relatively safe. But I do know what will happen if this happens when Nixi is an adult. It will get her police contact and at best shot with a taser and at worst with a bullet.
For the past few weeks her disorganized thinking has been creeping back slowly. She bit her sister (who politely said, "You don't bit me.") and when asked why said in complete seriousness that she was hungry. I asked her if we eat people and she replied, "No, cats." I asked her one last time why she bit her sister, "I said I was hungry". She goes from being manic and euphoric to borderline catatonic for two hours. She is not napping. Next year her class will not allow for nap time because its the later session. Looks like that may be a problem, as we had anticipated but hoped we would be wrong. We are headed up to Davis, the whole family, at the end of the month. We have to be able to do better than this by her.
Safi continues to struggle with the summer school changes and clearly the weight of an unstable Nixi has to be affecting her. She hit herself in the head the other day, and tried to hit me...behaviors I haven't seen from her since the first week of kindergarten and then two years before that. We need to focus on getting her back to a good place because this is scary just three weeks away from the start of the new school year.
A lot going on. Really heavy.
Sarah
No comments:
Post a Comment