Gavin’s appointment went well

Gavin's psychiatric appointment went great this morning. Nothing changed and we're going to continue pushing ahead with his current dose of Clozapine, at 300mg/day. There is little evidence that increasing the dose will produce a more positive outcome. In fact, we have a ton of evidence to the contrary. Gavin may never be free from delusion or psychosis, and that's something we've accepted. Our mission is to find a dose that is both safe and maximizes his quality of life. I feel like 300mg/day is a good balance. We will just keep on keeping on.. 😀

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It’s my fault, not his

I'm not having a good morning. I feel like I didn't sleep well and I'm not in a good mood. Gavin is particularly trying today, but it's not his fault. He always asks me the same questions over and over again. The difference today is that I'm not in a very good place. It's really my fault, not his. I need to work very hard to make sure that I don't lose my composure today. My kids are already saturated with stress, and they don't need me falling apart on them. Hopefully, I'll be able to reset the morning after we get home from Gavin's doctor's appointment..

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How my kids are dealing with the loss of my grandmother

I'm beginning to see the impact of my grandmother's death on my kids, particularly Emmett. None of my kids are talking about her or the fact that she's passed, and that's in stark contrast to what things were like while she was still with us. All three of my kids are Autistic, and that can make dealing with things like death, much more complicated. For the most part, Gavin seems to be doing okay. I showed him a video that my Dad sent me. It was taken a few days before she passed. She was thanking Gavin for the letter he wrote and read to her. She thanked him for sharing a video with her and told him how much she loved him. Gavin was clearly choked up by it,…

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The only advice I have for parents dealing with loss

I'm having a hard time getting motivated today. The boys and I have been working on Minecraft together, and that was fun. I haven't got much else done though. As I'm writing this, it occurred to me that part of the issue is that every day, about this time, I was visiting my grandmother at her nursing home. I've been doing that for months. It had become such a huge part of my life, and I sort of built my schedule around seeing her. Now there's a void. Not only do I not get to see her anymore, but I also have the vacuum I need to fill with something else. Unusually I do pretty good with change, but this is a lot of adjustment, and it's only been a…

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This is going to be a tough week

It's going to be a chaotic week. On Tuesday Gavin sees his psychiatrist for a follow-up with his Clozapine. Wednesday is calling hours for my grandmother, and Thursday is her funeral. I'm not looking forward to most of this, but it's incredibly important that I not allow it to pull me under. Today is the first day in about a week that I should be able to go walking. I need to make that a priority, not only because I refuse to let a month go by where I don't reach my goal, but also it's something that helps me cope with stress. I definitely need all the help I can get in that area. Depression is no joke, and this is the kind of thing that has historically knocked…

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How do you help your child with #Autism navigate significant loss?

On Saturday morning, June 15th, my grandmother passed away at the age of 94. I've been really struggling with this loss for several reasons, but the loss isn't supposed to be easy. It's a part of life that we all will someday face, and it's unavoidable. While this is a tragically, heartbreaking time for our family, it also presents an opportunity to discuss how best to handle situations like this. I want to pose an important question to my fellow Autism and/or Special Needs parents out there. How do you help your Autistic or Special Needs child navigate significant loss? No one is given an instruction manual when they first become a parent. Being a parent is an awesome responsibility, and when things like Autism are added to the mix,…

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My head hurts, and my heart is broken

I wanted to share a picture of one of my favorite moments over the last few months. The kids and I would stop by and have ice cream with my grandmother after school, almost every single day. She looked forward to it, and so did the kids. It was an extraordinary moment spent between my grandmother and her great grandkids. I'm so proud of my kids because they were very devoted to her and they each expressed it in a unique way. On Saturday morning, around 8 AM, my grandmother passed away. She was 94 years old. I've spent time with her every single day for the last few months. We were very close, and I don't know what I'm going to do. I'm broken.

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I want to share some good news

I've been living at my grandmother's nursing home for the last couple of days. My brain is completely fried, and I'm exhausted beyond belief. While I was here yesterday, Lizze got word back from her neurologist about the results of her recent MRI that was done on her brain. Her doctor contacted her to let her know that everything was normal, and there's no physical abnormalities in her brain. That means no tumors and the cysts aren't an issue either. That's obviously a relief but also frustrating at the same time. She's in so much pain all the time, and part of her would have almost been relieved if something had been discovered because then at least we knew the cause of her pain. That being said we're very grateful…

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