Read more about the article Heartbreaking signs that he’s getting worse
Gavin / General Update / Heartbreak / My thoughts

Heartbreaking signs that he’s getting worse

Gavin's showing more and more signs of regression. As someone who sees him all day every day, it's harder to pick up on things like this because it's generally a gradual process. When someone sees him for the first time in awhile, it's much easier for them to pick up on the changes. I've been paying closer attention lately because I've been worried that he was experiencing more regression, but wasn't sure. It pains me to say this, but he appears to be regressing once again. Regression is a huge part of Childhood Disintegrative Disorder, and what sets it apart from other, more common forms of Autism. Gavin's losing skills he'd previously mostly mastered. His executive function is very much declining. He's become more unorganized and has a shrinking vocabulary.…

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July 16, 2017
Read more about the article Heartbreak is absolutely crushing me tonight
Gavin / Heartbreak / My thoughts

Heartbreak is absolutely crushing me tonight

The boys and I had therapy tonight with Dr. Pattie. While I typically enjoy these family sessions, tonight's was a little rough for me. Tonight, Gavin unloaded a string of mission debriefings.  I know how much he likes telling us all about the missions he goes on with his invisible friends, and I would rather hear about it than not, but it sucks. It sucks because it's crystal clear in those moments, that Gavin is not okay. It sucks because it shows that he's still seeing things that aren't there. He still believes that he's a superhero, who's fighting intergalactic battles, against evil villains. Tonight he went on about three of his latest missions. I'll just list the bullet points: Snatchers Elements of Harmony Telepathically entering Twilight's mind Disections Sword…

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June 28, 2017
Read more about the article He’s getting worse and I can’t hide from that truth anymore
Gavin / Heartbreak / My thoughts

He’s getting worse and I can’t hide from that truth anymore

It's becoming more and more difficult to pretend that Gavin's not getting worse. I know he's never going to get better, and that's something both my wife and me have come to accept over the years. While I've accepted that fact, it's not that cut and dry. Gavin's in an almost constant state of decompensation. Sometimes it's a slower process, and harder to pick up on, while other times, it's pretty rapid. One of the main issues revolves around his memory. I tend to want to rationalize it by saying something like, he's just having a bad day or everyone forgets things. The truth is, it's not normal to forget things like Gavin does. It's not normal and it's not a good. Here's the latest example of what I mean.…

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June 24, 2017
Read more about the article Why my heart breaks for my oldest #SpecialNeeds son
Heartbreak / My thoughts

Why my heart breaks for my oldest #SpecialNeeds son

With all Gavin has going on in his young life, he's blissfully ignorant to what it all means. In a way, that's a blessing. He's always so positive and looking forward to growing up. He's seventeen years old and he's looking forward to growing up.  Gavin doesn't understand that there's a better than good chance, he will never be able to live on his own. He doesn't understand that he will never drive a car. As heartbreaking as it is for me to even say this, he will never get married or have kids of his own. 🙁  When Gavin says he can't wait until he's grown up, I don't know what to even say, except don't be in such a hurry to grow up..  Today he told me one…

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April 18, 2017
Gavin / General Update / Heartbreak

A HEARTBREAKING UPDATE on Gavin 12.24.16

I wanted to take a few minutes and bring you all up to speed on Gavin's current status. Lizze and I have been seeing some things that while concerning, aren't really super surprising.  Behaviorally, Gavin is continuing to do well. Unfortunately, there's more to Gavin's situation than behavioral concerns.  I remember a time in the not so distant past where his behavioral issues were so serious, we had to actively seek out residential treatment. That's no longer even visible in our rearview mirror.  The issues of concern right now are are physical and emotional health.  Gavin's physical health seems to be sorta stable right now but we're waiting to get his lab results before letting our guard down.  Over the last few weeks, we've been witness to relatively significant cognitive…

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December 24, 2016