I haven’t written in a day or so because I’m feeling buried alive at the moment. I’m wrapping up season 2 of the podcast and finalizing the last few scheduled interviews, while planning season 3. This is actually very time consuming but every episode is a profit and it helps feed the kids, I keep doing them.
I’m also trying to finish up Christmas preparations. Not all of the kids are excited about Christmas this year. The events that have transpired are weighing heavy on us and Christmas without their mom living with us is very difficult. While this is going on, I’m also trying to plan for our trip to Florida early next year. It’s a huge opportunity for us and it’s important to the kids. All else aside, it will be very healing for the four of us and that’s very important.
We still haven’t decorated the house for Christmas. I’m trying to be as respectful of where they are as I can but I also think that we still need to celebrate Christmas in a memorable, meaningful way.
I’m struggling with some SSI paperwork for one of the kids. It’s just a review but there’s so much paperwork and I have to get it out early next week at the latest. Staring at this pile of papers is very, very overwhelming but it’s absolutely necessary and of vital importance.
Emmett is home from school again due to illness. He’s still sick and going back to the pediatrician this evening. Big thanks to my parents for taking the other two kids at the last minute so I don’t have to drag them into the waiting room full of sick kids. This is especially true in regards to Gavin and his compromised immune system.
One of the tricky things I have to deal with in regards to Emmett being sick is the fact that I can’t rely on his body temp to tell me anything. His fever disorder makes it impossible to know if he’s running a fever because he sick or because of the disorder.
Emmett’s really stressed out and I’m seeing him reverting to past behaviors lately. He’s not sleeping in his own bed and every day is another tummyache. He internalizes everything and I’m working with his therapist to find ways of helping him learn to express himself.
As smart and articulate as he is, he’s always struggled with expressive language skills. He isn’t able to explain how he’s feeling about something. He can understand other people’s emotions but that skill doesn’t appear to work for him in regards to himself. It’s very frustrating for all involved.
I also have some concerns about Gavin. His morning dose of Clozapine is beginning to kick his ass. He’s becoming heavily sedated and that’s a problem. He slurs his words and walks into things. His gait is unsteady and he’s more easily confused. It’s another step in the Gavin’s body is handling Clozapine differently journey. We keep having to lower the dose and any lower, and there may not even be a point in remaining on it. That’s a very scary thought.
We keep dealing with this as it pops up by dropping the dose as low as we can, whilst ensuring it’s still effective. He’s good for a little while and then he begins having problems with the lower dose. The pattern continues and it’s concerning because we literally can’t go down much further.
I have a call into his psychiatrist and I’m waiting to hear back.
If I hadn’t said this before, and I know I have, Autism and Special Needs is not easy.