I've been working on this update for a little while but haven't been able to keep my thoughts together.
If you take one thing away from this entry, let it be that *I'm very worried about Gavin. Lizze and I both are very worried about Gavin. *
Let me begin with the fact that Gavin's heartbroken. His beloved Master Sword broke yesterday and it's like his entire world has crumbled around him.
[videopress yBQWDnIr]
Every single morning, Gavin trains with his visibly challenged, group of super best friends. This is one of the many teams he commands. These teams help to defend the Universe from evil villains like Eggman or Shredder. Just so we're on the same page, these are all Schizophrenic hallucinations and are only real to him.
Anyway, every morning he trains with his team, using his Master Sword. Yes, that's the sword from Zelda. During yesterday's training session, things got pretty intense and he ended up breaking his precious sword. I wasn't sure exactly what happened but was able to pull video from our Vivint Security Camera.
I don't think most people appreciate how something like this can impact someone like Gavin. To be honest, until I saw his reaction in the video, I didn't know the full extent either.
I told Gavin that when I have the money, I'll replace his sword with something like a Nerf sword that's meant to be used in the manner he uses it.. He'll have to wait about a week but being the awesome kid that he is, he's okay with that.
As for his overall condition, there are some updates I need to share.
For the past few weeks, we've been seeing a steady decline in his level of functionality. Things he was once able to do, are no longer being done. This is very evident in his chores and how he's doing them now.
Gavin has been learning to do things around the house for a last few years. He's not been in school for both physical and emotional health reasons, but needs to be learning some basic life skills.
I've taught Gavin to do the dishes, wash his own laundry, help out with the litter boxes, and his personal favorite, managing the trash and recycling.
Over the last few weeks, there's been a dramatic decline in his ability to perform these tasks. For a very long time, he was doing exceptionally well. In fact, he was doing so well, I was honestly very surprised.
Anymore, he doesn't remember single step tasks, let alone more complex ones.
What he does manage to get done is well below his previous standards and needs to be redone by Lizze or myself. Dr. Pattie wants us to continue having him do these things because it's important that he not stop, simply because it's become more difficult, and it gives him a sense of purpose.
Essentially, I'm having to re-teach these things to him again. This time however, he's much slower to grasp the concepts.
To help put that in context, it took the better part of two years to get where he was, and now we have to move even slower. That definitely ups the level of frustration because it would be so much easier to simply do these things myself, but that's not the answer.
While he's lost many of these previously mastered skills, he's doing exceptionally well in one area in particular.
Gavin is doing a really good job of managing his medications.
He takes meds twice a day and they come already dosed out, inside a tiny plastic packet. All he has to do is take the one labeled *morning, *in the morning, and the one that says *bedtime, *at bedtime. He's can even mix his own Miralax..
These are absolutely vital skills for him to master because he needs these medications for the rest of his life, and we may not always be there to do this for him.
At this point in time, that is the only bright spot in this constant state of regression. Granted, it's an important bright spot, but it's hard to feel good in the face of everything else that's gone downhill.
Gavin is seriously struggling with his memory. Aside from remembering to take his medications without be prompted much of the time, he doesn't retain much else.
Just as an example. If I send Gavin upstairs to change his shirt, by the time he hits the landing, he's already forgotten what he was suppose to do. This type of situation applys to most areas of his life.
He just had a full work-up and everything is normal for him. He's not deficient in anything that should impact his memory. In fact, everything checks out, leaving only one realistic cause on the table.
Unfortunately, the cause of this is probably the progression of his overall regression. I know that rhymes but this is anything but good. The very nature of Childhood Disintegrative Disorder is such that we can expect these types of regressions on an ongoing basis.
CDD is a bastard of a condition because all it does is take and take, until he has nothing left...
While there isn't much known about this extremely rare form of Autism, Gavin presents in an unusual way because most kids seem to plateau, long before the age of seventeen. Gavin has been experiencing regression at varying rates, since he was about three or four years old.
It's been one of those *two steps forward, three steps backward *kind of journeys. Lately it's been more steps backwards but at the same time, we're blessed for all the steps forward we get, even if they are few and far between.
By saying that I'm heartbroken, I'm not doing justice to what I feel, but it's the only word I know that can even remotely describe how this feels.
As for Gavin, he's almost completely oblivious to all of this. He gets frustrated with his memory issues but aside from that, he's not aware of the gravity of his situation.
I'm not sure if that makes it harder for me to cope with all this or not. On one hand, I'm glad he doesn't understand enough to cause worry or anxiety. On the other hand, he doesn't comprehend his situation and that makes me realize how far he's already regressed.
