It’s the not knowing that kills me as a parent

It's becoming clear that Gavin's struggling more and more. Unfortunately, there's no way to know if this is another leg of his journey with Childhood Disintegrative Disorder, the result of changes to his medications or just par for the course. His level of functionality is decreasing and doing so in weird areas. Things like self-awareness are slipping. There's never been a great deal of that to begin with, so this change is noticeable. What do I mean by self-awareness? Gavin had an ice cream sandwich this afternoon. About three hours later, I took the boys to the park to hunt Pokémon for short while before picking up their pizza for school tomorrow. I wasn't paying attention to Gavin's face, like I usually do before we leave and I was caught…

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1 BIG reason I’m worried about Gavin

This is an important update on Gavin's current overall status and one that's a bit concerning, although not entirely unexpected. Gavin's officially off of Lithium for the first time in over a decade. We were a bit caught off guard at the timing because we were supposed to stop this coming Thursday but when his new box of meds was delivered this weekend, it was devoid of Lithium. By the time we would be able to address this, it would be close to the original cutoff date anyway. Frankly, it doesn't matter, aside from finding out why they pulled it in the first place because we never told them to. Anyway, Gavin's off of Lithium for the first time in over ten years, and we're bracing for a major unknown.…

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Major Update: We saw the psychiatrist today

Many things have happened today but in this entry, I want to focus on what is arguably the most pivotal.  I spoke previously about Gavin having his Lithium dose cut in half, with the potential of being totally removed in the near future. The near future has arrived and we met with Dr. Reynolds this afternoon about this very subject.  The focus of today's appointment was to discuss how things were going on the current (reduced) dosage and then decide where to go for here.  Lizze and I both agree that Gavin is or at least appears to be manic. Is this the result of the decreased dose of Lithium? My personal opinion is that it's probably not.  The reason I say that is because Gavin's been on 900 mg/day…

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My heart broke twice today (part 1)

I was excited about today because we had some exciting things in the works and Emmett even got off to school without much problem. He ended up wearing his flip-flops to school.  Shortly after home from dropping the boys off at school, Lizze and I wanted to finish a show we had previously left unfinished.  Gavin came downstairs to deliver a message.  He wanted me to know that he would be spending most of the morning at base. Apparently, there was a huge party in celebration of the anniversary of his super hero teams birth.  Lizze and I sorta looked at each other as Gavin continued.  He went on to explain that there's going to be a big party to celebrate the anniversary of his super hero team coming together,…

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3 items are helping my son with #Autism gain independence  

I've spoken about this a few times before, but I wanted to share something we've done, to help our low functioning teenager with Autism, gain a bit more independence. Gavin is seventeen years old and struggles in most areas of his life. He's unable to remember things, and his cognitive ability is in a slow, unending decline. One of the things that we've recently done to help him better manage his daily life, weekly schedule and bedtime routine, is introduce some home automation into his room. I've been working on automating our home over the last year or so. For whatever reason, Gavin was resistant to being included in this process but a few days ago, he decided he'd like to give it a try and that's pretty exciting because…

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Gavin tried hopping out of a moving car today

I'm really struggling with Gavin today. He's been off since waking up this morning.  When I took him to get his bloodwork done, he totally freaked me out. I had just pulled into the parking lot and was pulling into a parking space. The car was still moving forward, when Gavin rips off his seat belt and tries hopping out of the car. WTF Gavin? I instinctively yelled at him because I needed to stop him from continuing to try and let himself out of a moving car.  He was very apologetic and I don't think he even realized what he was doing. He was so focused on getting his bloodwork done, everything else just faded away, including the fact that the car was still moving.  A guy can only…

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General Update: The Good News and The Bad News

I've been spread pretty thin this week and I haven't written much at all. I'm trying to refocus a bit and get back into the habit but frankly, it seems overwhelming sometimes. I'll do my best to get back on track.  There are a few things that I'd like to update you on.  First and foremost, Elliott finally was able to fall asleep at his normal bedtime hour. The last four or five nights, he's really struggled to fall asleep and wasn't able to until well after midnight. Last night however, he never fell asleep and that's not a good thing.  I'm not sure what was different about tonight but he fell asleep without a problem. Lizze and I are both grateful for that.  Emmett's been Emmett. Shoes and socks…

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General update and a new problem

We had a pretty good day blah blah blah... Check out the video of me talking to the boys about their day. I'm not trying to rush this but I want to get to something else before I'm too tired to finish this post.  https://youtu.be/wYW3c2QIBrk Moving on, we're having a new issue as of late and tonight makes the fourth night in a row. This issue is in regards to Elliott's new found inability to fall asleep at night.  This has been a very recent turn of events. He's had issues falling asleep on and off but this seems different. He's not able to fall asleep until well after midnight.  I'm not sure what's going on or what's changed but somethings definitely going on.  Lizze and I are sleeping in…

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