Mustache Monday went swimmingly!
Jr. Firefighter Nixi!
Safi's school Open House...
The fun before the Storm at the Farm Equipment Show....
Zoey
Logan
Josh
Wow. A week full of up's and the proverbial down's.
Nixi took her dad on her firehouse field trip and they had a great time. This was a great source of anxiety for Mike and I because she has been steadily spiraling further and further out of control. Massive meltdown's after school, struggling to get through the days, hallucinating, crying, angry, confused, and scared. After the park one day she looked troubled. As I buckled her into her car seat she asked me, "Are we in a storybook? Is this land real? Are we real?" Broke my heart, total reality disconnect and she was fully aware of it and scared. Mike and I talked it over and it has become clear that we, alone, cannot keep her at a constant baseline. I will call the psychiatrist up in Davis on Monday, we are going to start her on medication. In hopes of delaying the toxic anti psychotics, we are going to request that Nixi be put on a neuroleptic (Lamictal) which is used "off label" as a mood stabilizer. The side effect profile is livable, no weekly blood draws, and it is FDA approved for children as young as 4. Perhaps if we can get her mood in check taht will buy us some time before inevitably having to add an anti psychotic.
Safi, poor Safi. We talk about this all the time in this blog....autism and the need for routine, predictability, and consistency. I can provide that, Mike can provide that, Nixi is a lose cannon. Lately it seems like every time Safi is in a great mood and in a great state of mind, Nixi bulldozes over her with her unpredictable, inconsistent mood swings. By the time Safi is totally upset, dysregulated, and all around jacked up Nixi comes back around and has absolutely no idea why everyone is upset. It breaks my heart. Her little sister, her best bud, is also a weight around her ankle pulling her down and drowning her. I'm pretty sure I used this analogy in reference to the two last April. Ok, I just ready through the final blog entry from April 2012 and yes, I did. I also railed on Autism for taking my youngest child away.........perhaps this year I owe Autism an apology because this year I know that its not Autism stealing my child and warping her brain. That beast's name is chronic mental illness and it makes Autism look like a furry little kitten. I know, the April posts are supposed to be about Mike and my experience as parents of a child with autism. I can't help it folks, for once in our lives as these girls' parents, Autism just isn't the priority. Supporting our daughter with Autism as she struggles to find her legs in a turbulent sea of her sister's mental illness? YES!
Overall, Safi handles this in such stride and much better than the rest of us. She imposes her own structure when our structure is disrupted. She even lets some of her routine go when we need the flexibility. She recovers exceptionally quickly from upsets and is even quicker to tell you she's ok and crack a joke to make you smile. She is able to sort of melt into the waves of Nixi's illness and ride them with her until they crash into our world. She floats so easily in and out of Nixi's world. With her there are no questions or assumptions, she knows that Nixi isn't with us and she knows how to meet Nixi wherever she is. Its really beautiful and sad all at the same time. Where we really see the stress taking its toll is on her attitude. She is flippant, rude, and oppositional once her reserves are spent and I am the prime target. In the midst of all of Nxi's chaos it can be hard to remember that Safi has so many other things to deal with besides her crazy family. She has spelling tests, math time tests, social hurdles, and Autism. Some days her reserve tank is fuller than others. She is a really amazing little girl. She deserves better.
Unfortunately, that's how it goes in a family with multiple special needs kids. Someone always seems to get short changed and we are left hoping that whoever it is can remember that they, too, were once the"critical kid". We long for the day when there is no "critical kid" consuming our every waking moment. I literally cannot imagine what that would be like.
We capped off the week with a fun then absolutely horrific trip to the Antique Farm Equipment Show. My best friend, Emily's sister was working the kiddie area and got us into the show for free. Once we hooked up with Emily and the kids it was game on. They all stormed the bounce house en mass and everyone was having a great time. Until Nixi was not. When Nixi started to implode in the bounce house she looked me straight in the eyes and screamed, "I'm doing the best I can...the BEST I CAN!!!" And she was. That's what made it so horribly sad, to see her reduced to a shaking, screaming, crying shell of the little girl taht once was. She KNOWS that she's disappearing right before our eyes. She KNOWS that she is losing touch...and she is scared. I'm scared, too...and this she knows as well. And so it is and, for now, so it shall be.
Sarah
Overall, Safi handles this in such stride and much better than the rest of us. She imposes her own structure when our structure is disrupted. She even lets some of her routine go when we need the flexibility. She recovers exceptionally quickly from upsets and is even quicker to tell you she's ok and crack a joke to make you smile. She is able to sort of melt into the waves of Nixi's illness and ride them with her until they crash into our world. She floats so easily in and out of Nixi's world. With her there are no questions or assumptions, she knows that Nixi isn't with us and she knows how to meet Nixi wherever she is. Its really beautiful and sad all at the same time. Where we really see the stress taking its toll is on her attitude. She is flippant, rude, and oppositional once her reserves are spent and I am the prime target. In the midst of all of Nxi's chaos it can be hard to remember that Safi has so many other things to deal with besides her crazy family. She has spelling tests, math time tests, social hurdles, and Autism. Some days her reserve tank is fuller than others. She is a really amazing little girl. She deserves better.
Unfortunately, that's how it goes in a family with multiple special needs kids. Someone always seems to get short changed and we are left hoping that whoever it is can remember that they, too, were once the"critical kid". We long for the day when there is no "critical kid" consuming our every waking moment. I literally cannot imagine what that would be like.
We capped off the week with a fun then absolutely horrific trip to the Antique Farm Equipment Show. My best friend, Emily's sister was working the kiddie area and got us into the show for free. Once we hooked up with Emily and the kids it was game on. They all stormed the bounce house en mass and everyone was having a great time. Until Nixi was not. When Nixi started to implode in the bounce house she looked me straight in the eyes and screamed, "I'm doing the best I can...the BEST I CAN!!!" And she was. That's what made it so horribly sad, to see her reduced to a shaking, screaming, crying shell of the little girl taht once was. She KNOWS that she's disappearing right before our eyes. She KNOWS that she is losing touch...and she is scared. I'm scared, too...and this she knows as well. And so it is and, for now, so it shall be.
Sarah
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