childhood disintegrative disorder Archives - Page 186 of 276

There’s way too much shit to worry about as a special needs parent

I've been playing a very frustrating game of phone tag with the pharmacy this afternoon. I need to make sure they either look out for a fax from the lab or call and have it faxed over because Gavin needs his refill tomorrow. I cannot stress enough that Clozapine is the most tightly controlled medication in the United States for a reason. You do not fuck with this medication and it has to be taken seriously. The fucking stress that we experience simply because of this goddamn medication is inexplicable. I also reached out to his doctor and asked that they immediately email with the results of his his labs because I'd like to sleep tonight. They do that anyway but I feel better reminding them. They know how serious…

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February 15, 2018

Gavin / My thoughts

Gavin went to bed not feeling well and I’m worried

Gavin had a really stressful day yesterday. He did great with having to get more bloodwork done but it took a lot out of him. As the day went on, it was clear that he was at the end of his rope. The boys were being annoying, as little brothers will be, but Gavin didn't have as much patience as he usually does. After dinner, he ended up with really bad reflux and it took quite a bit of work to help him feel better. He went to bed tonight still not feeling 100%. I don't know if the reflux was stress related or if it was something he ate. Maybe it's a little bit of both or something else all together. I'm worried about him and there's nothing I…

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February 9, 2018

Gavin / My thoughts

It’s too painful to talk about

As time goes by, I'm becoming more and more concerned about Gavin. There isn't just one thing in particular that's got my stomach in knots but rather a conglomeration of symptoms that aren't sitting good with me. He's losing his already limited problem solving skills. I just watched him struggle to figure out how to open the door while he had things in his hands. All he had to do was simply move ome item to his other hand or put it down. Instead, he stood there not knowing what to do. He did eventually fumble his way to opening the door but it was very clear that he was struggling. I wasn't being a dick by letting him struggle. It's important to know where he is and what he's…

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February 2, 2018

My thoughts

Gavin’s showing more signs of regression

I thought it would be a good time to do an overall update on how Gavin's doing. I've already mentioned a few times recently that Gavin just turned 18 last week. That means we now have an adult with Autism in the house and that's a first for us. That's not exactly true. Lizze is an Aspie, but it just seems different because its one of our kid's who's now an adult. Gavin's got quite a bit on his plate for someone so young. Lizze and I were talking about this the other night as we were trying to plan out this whole guardianship thing and we ended up discussing how we thought he was doing. It evolved into comparing what our concerns for him were and things we've noticed…

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January 25, 2018

Gavin / My thoughts / Schizophrenia

Sadly, he’s hearing voices again

Gavin had a pretty good day, at least physically. On his first full day of being an adult, he spent a large part of it hearing voices. Gavin's was officially diagnosed with Schizophrenia a few years ago. This is far from the first time Gavin's heard voices. In fact, he sorta lives in a perpetual hallucination. He has friends that only he can see and he goes on dangerous missions with them on a daily basis. These are the typical voices he hears. Unfortunately, what we're seeing now is that he hears us talking to him when we aren't. He's constantly keeps finding us because the says we called for him. I'm not sure what's going on with this but it's not something that's been very common over the years.…

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January 20, 2018

Gavin / My thoughts

Heatbreaking: I wish I could carry his burden for him

We celebrate Gavin's 18th birthday this week. This is a moment that's absolutely worth celebrating, for a million reasons. While there's so much to be grateful for, it's really hard not to notice things that are cause for worry. Over the last few days, I've noticed that Gavin is forgetting what some words mean. The one that took me by surprise was the word maintenance. He doesn't remember what it means to perform maintenance on something. There has been a few others as well but I can't remember them off the top of my head. I know I'm not the only one taking notice because Gavin will ask what a word means and Lizze will look at me in concern. Elliott and Emmett are noticing as well. They're very respectful…

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January 16, 2018

My thoughts

Dry air makes it so hard for me to sleep

I had a rough time sleeping last night. Majority of the problem was related to the air being so dry, it made me really stuffy and that always makes it hard for me to sleep. It's like a fricking desert. Around 2 AM I ended up downstairs on the couch. Its easier to breathe down there for some reason. I need to put the humidifier on the second floor because that should make a difference. I didn't end up fall asleep with Ruby curled up next to me. Thankfully, the boys are at Lizze's parents house, so I was able to sleep in. Gavin didn't need anything this morning and I wasn't disturbed. All we have to do today is take Lizze to the dentist, get stuff for the boys…

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January 15, 2018

Autism Parenting Struggles / Discussions / My thoughts

As an #Autism parent, why don’t you get a break?

We've established that #Autism Parents aren't getting the breaks they need. The next question is why. Why don't you get the breaks you need?

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January 15, 2018