Gavin Archives - Page 6 of 113

My #specialneeds #immunocompromised son is terrified by #COVID19 and afraid of dying alone

I just spent a good chunk of time trying to convince Gavin that he does not have COVID19. This is heartbreaking and becoming an ongoing struggle that's proving difficult to navigate. In case you're one of my many new readers, here's a little background on Gavin so you can put this into perspective. Gavin is 20 years old but emotionally and cognitively, he's somewhere in the neighborhood of 5 or 6 years of age. That's the best guess as to where he is developmentally. Gavin also has many health issues that render his health fragile. While they all matter, the biggest concern in regards to COVID19 is that he's significantly immunocompromised. This means his immune system doesn't function properly and in order to stay healthy, he needs to infuse a…

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May 7, 2020

Gavin / My thoughts

A heartbreaking conversation with my oldest

Gavin had a very emotional breakdown again tonight. He's been generalizing things more so than usual and while many times, it's not a big deal, sometimes it needs to be corrected. We were discussing a situation with his meds that was only problematic because he was making assumptions that were not based on fact or in reality. Anyway, he became very emotional and the conversation took a very unexpected turn. He began talking about his former high school friends and how much he missed them. That led to telling me that he wishes he had earned his high school diploma. It went from there to wanting to go to college, so he could figure out what he wants to do with his life, so he could buy his own house.…

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April 27, 2020

Clozapine / COVID19 / Gavin / Lockdown / My thoughts

I’m seeing behavioral changes and some are concerning

I wanted to devote an entire post to talking about how Gavin's doing. I haven't really updated in a little while because it's been pretty much status quo. That's not a bad thing but unfortunately, it can't last forever. Gavin is officially off the Clozapine and seems to be withdraw free. That's a very good thing. He needed an extra step in the weaning process and that seems to have eliminated the negative symptoms from a week ago. The issue now is that Gavin is unmedicated and not easy to cope with. It is however, what I knew would happen but I didn't feel I had much of a choice. I thought I would share some of my observations in regards to changes in his behavior. The only way I…

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April 13, 2020

Emmett John / Gavin / My thoughts

It’s a Bad News/Good News thing

We've made it to Wednesday and while I'm struggling to establish a new routine, we're hanging in there. One of the challenges with starting a new routine at the moment is that no one is sleeping well, except for Gavin. I'm struggling to fall asleep and so are Elliott and Emmett. Everyone is dealing with a great deal right now and it's sorta turned their lives upside down. The boys were still struggling to get their feet underneath them after Lizze left and we were plunged into the COVID19 nightmare. It's safe to say their snow globes have been shaken so much, the can't even see where they're going. I'm just trying to hold everything together as well and feel like I'm failing, miserably. Poor Emmett is so stressed out…

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March 25, 2020

Clozapine / COVID19 / Gavin / Lockdown / My thoughts / Planning

Keeping my #immunocompromised son safe from #COVID19 isn’t easy

We survived the day and I feel pretty good about that. I was able to get the boys school work to and from the school this morning and had my video conference with Gavin's doctor. The morning went off without a hitch. As far as updates are concerned, the only major one is what we decided to do with Gavin's meds. Basically, the conversation with his doctor revolved around how to handle Gavin's Clozapine, while we're on total lockdown, inside the COVID19 pandemic. Clozapine is used to treat Schizophrenia and it works well. It's also among the most tightly controlled medications in the United States, requiring blood work before every refill. The concern is that in order to maintain the medication, I would have to take Gavin to have his…

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March 24, 2020

Gavin / Happy Birthday / My thoughts

A Birthday We Almost Didn’t Get To Celebrate

Today is a big day in The Autism Dad household because Gavin turns 20 years old. This would be a milestone birthday on its own but for us, it's more than that. For the last decade or so, Gavin's health has become very fragile. I recently wrote all about that and you can click here to catch up. Long story short, there were times over last decade, where there was very real concern that Gavin wouldn't see his next birthday. There were times where Gavin was experiencing an autonomic crisis and it was so bad and latest so long that we were told to prepare for the worst. These are old photos but they are taken during an autonomic crisis. I'm grateful for every year we have with him and…

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January 18, 2020

Gavin / Genetic Testing / My thoughts / Probably Genetic

How @ProbGenetic is helping us take a MAJOR step forward in the search for answers

If you've been following our story for a while, you likely know that its been on a very long, very challenging journey with Gavin for most of his life. If you're new here, I'll give you a bit of backstory, to help put the significance of what I'm about to share with you, into the proper context. Gavin will be 20 years old on January 18, 2020. He deals with more than his share of serious physical and emotional health issues. Gavin began regressing about the age of 4. The only way I can describe it is to say that he was put to bed Gavin, and he woke up an entirely different kid. The change was simply that profound. I know this sounds crazy but it was like someone…

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January 16, 2020

Gavin / My thoughts

Gavin did the most amazing thing today

It's been a little while since I haven't really talked a great deal about Gavin lately. I suppose the reason for that is that there isn't a great deal that's new. Gavin isn't struggling with everything that the boys and I are. He carries his world with him and his mom moving out has no real impact on him because his life moves on just the same. Having said that, Gavin has made some decisions today and I'm sorta beside myself with amazement. I felt it was important to share this because it's really cool. Gavin spent some time working with my Dad today and when he came home, he proclaimed that he wants to get a job. This isn't something I've ignored but it's just not been something that…

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December 15, 2019