Why is this so fucking complicated?

The goddamn pharmacy didn't get Gavin's Clozapine filled in time for the second week in a row. This is very time sensitive and it's in a set schedule. Gavin gets his bloodwork done on Monday or Tuesday and they pull the labs Tuesday afternoon. The script gets filled and delivered by Wednesday afternoon. It's really not that complicated because it's the same thing each week. I made several phone calls at the beginning of the week to ensure everything was in order. I even called late Tuesday afternoon to remind them to call for the labs and make sure the script was either ready for pickup or delivered by Wednesday afternoon. I was assured this wouldn't be a problem. Thankfully, we have an emergency supply to cover for disruptions like…

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When your special needs child turns 18

I just got a letter from Social Security in regards to Gavin. He and I have an appointment with social security on January 25th in regards to Gavin becoming an adult. Part of Gavin turning eighteen means that things like this are going to come up. We're currently working on permanent guardianship, which will continue to allow us to manage Gavin's life when he can't do so for himself. Gavin's nervous about going because he's never had to go to one of these before and he's concerned about shots. I'm not sure where that came from but in his head, he think the social security worker will want to give him a shot. This appointment will be the first that we have to attend in order to keep Gavin's affairs…

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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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Doing right by Gavin for his 18th birthday isn’t as easy as it sounds

Gavin will turn eighteen in a few days. To be honest, that's a pretty big deal for a number of reasons. The most obvious is that he's physically made it to eighteen and I say that because of his fragile health. He's had some close calls over the years and there were times we weren't sure we would ever see this day. Instinctively, we want to make a huge deal out of this day. We want Gavin to have the best birthday of his life thus far. There are so many things that Gavin will never be able to celebrate. Things like high school graduation, getting his driver's license, going to college and truly living on his own. As much as we want to through a huge party for him…

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When your child with #Autism turns 18 and you need to obtain legal guardianship

Gavin will be turning eighteen years of age on January 18th. Unfortunately, he's unable to survive on his own and is also unable to make his own decisions, at least not without major help. His cognitive ability is continually declining and we have no choice but to seek permanent guardianship over him. We've never been through this process before but have acquired the paperwork and have the appointment with his psychiatrist to fill it out. I hate the idea of having to do this but it's unquestionably in Gavin's best interest. My goal is to share this new journey and help provide insight into this process. It's important to understand that not all kids with Autism will need something like this when they turn eighteen. Gavin is severely cognitively impaired…

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3 pictures of moments that made me smile

We all have our good days and our bad days. Yesterday was a blend of both good and bad but there were also some bright spots as well. I wanted to highlight a couple of these bright spots because they made me smile. First up is courtesy of Mr. Gavin. His new IVIG infusion pump finally showed up and he was able to use it for the first time tonight. He was excited and it was a pretty good infusion.. ☺ Gavin killed me with his super serious face but whatever... He's happy and that makes me happy. ☺ The final bright spot took place much later and was signed, sealed and delivered by Mr. Emmett. I mentioned in the previous post that Emmett wasn't feeling well last night. He…

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Finally, some good news

About mid-morning, I received a phone call from the pharmacy responsible for my recent stress level increase. They informed me that Gavin's pump had to be ordered, but it had arrived and was going to be delivered today. I'm glad it's going to be here today, assume it arrives because it hasn't yet. The frustrating part remains though. When it's known that something is this important and it won't arrive when promised, a quick phone call would have alleviated a great deal of stress from the last week or so. Shit, for that matter a returned phone call would have worked as well. At this point, as long as it arrives today and Gavin can do his infusion in the morning without having to worry about the pump dying on…

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I’m really getting pissed

I left a third message at the pharmacy that supplies Gavin's IVIG infusion supplies. You can't just get these anywhere, as they are considered specialized items or something to that effect. The pump that Gavin's been using for his IVIG infusions is going bad. It's about five years old. It's successfully delivered nearly five hundred infusions for Gavin but it's on its last leg. It no longer applies consistent pressure and that makes for a difficult infusion. I called on January 2nd to have a new one delivered. I was promised it would be here by last Friday, in time for Gavin's infusion that day. It never arrived and they never provided an explanation as to why. As I stated above, I've left three messages this week alone and not…

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