How many times can one father’s heart break? Too many. The answer is too many. 




I don’t feel really positive right now and that bothers me.  Unfortunately, the reality is that sometimes life just sucks. Life is unfair and cruel at times and it feels like Gavin has had a disproportionate amount come his way.

Gavin’s still hallucinating and frankly, things are getting worse.

He’s becoming very preoccupied with his visibly challenged group of super best friends and is spending less time in the reality that the rest of us live in.

His friends are always coming with him now and he’s involving them in his decision making.

This morning he drew a picture of Twilight Sparkle’s Midnight form. Twilight Sparkle is one of his visibly challenged super best friends.

Before he drew her in this particular form (seen below), he told me that he needed to ask her permission first. Apparently, this Midnight form was evil or something like that and he wanted to make sure it was okay with her that he drew her like that.

My first thought was, that was nice of him to consider her feelings.  Then I realized that he was considering her feelings. He was considering the feelings of a cartoon character that has none.
It’s sweet of him to do that and I think it goes to highlight his remarkable character. In fact, I’m even proud of him for doing that, as weird as that may sound.

The concern is that he’s further blending these two worlds together and becoming even more confused.

It’s really hard to watch him go through this and it’s only getting worse. He’s also becoming more and more oblivious to the things going on around him.

I share this next part because it helps to pull this all into context.

Gavin and I went to the grocery store today, in order to get some things for school lunches and dinner.  I had asked Gavin to change out of his sweatshirt because it was too hot outside for him to wear it.

We did our shopping and as we were walking out of the store, I realized that Gavin had put his Polo shirt on inside out.

I didn’t say anything to him at this point because I knew how he would react and we were already done and getting into the car so I figured we’d address it at home.

We’re at a stop light and Gavin’s begins staring at his shirt.  I can see the gears trying to turn as he’s staring at himself, as though he knows somethings wrong but can’t figure out what it is.
I asked him what was wrong and he tells me that the logo of his shirt had fallen off. Are you sure that’s what happened, I asked him. He replies with what else could it be?.?

The shirt is obviously inside out, especially when you’re up close and personal. I hadn’t noticed it right away because I was distracted but there’s no mistaking that it’s inside out.

I kept encouraging him to look a little closer but he was convinced that the logo had just fallen off.

When we got home, I sorta lost track of this while I was making dinner and forgot to follow up with him until after.

Lizze and I pulled him aside and asked him if there was something wrong with his shirt. He said the only thing wrong with it was that the logo had fallen off and that’s it.

He just couldn’t see the shirt was on inside out.

When I told him that it was inside out, he denied it and insisted the logo had fallen off.  I asked him to please try and button his shirt up. This is when it finally clicked with him.

Of course that led to a massive meltdown, where he physically beat himself up.

We explained to him that things like this happen.  I bet it’s happened to everyone at some point in time. It wasn’t a big deal at all and I said that sometimes when we’re in a hurry, we can make silly mistakes like this.

He had to go to his room to calm down.  He was starting to scare his brothers but he never was a threat to anyone and he did a fantastic job of calming himself down, once in his room.

When he came back down, it was over and done with.  He never mentioned it again, aside from apologizing for the meltdown.

This is just one example of where Gavin’s slipping.  This is the same kid who can build amazing things out of Legos but can’t figure out how to close a pizza box anymore.

While there’s truth in what I told him, there’s a very obvious decline in his level of self-awareness.

I don’t know if this is one of those declines where he gets back what he’s lost or if it’s just lost and gone forever.

Maybe he’s becoming so consumed with his super best friends and the missions they go on, he’s just more out of touch than what is typical for him.

As his Dad, my heart hurts for him and I’m fearful of where this is going to lead.. Childhood Disintegrative Disorder is a very, very devastating condition and the gut wrenching reality is that nothing can be done to stop, slow down or reverse any of the regression.

It’s important that we look at this realistically for a number of reasons but one of the most important reason is our expectations.

Therapy isn’t going to make anything better and honestly, we probably won’t see much, if any improvement.  We know of that therapy at this point is all about helping him to maintain as much as possible, for as long as possible.

To have any other expectations would lead to further heartbreak.

This doesn’t mean we’ve given up. We’ll never give up and neither will Gavin for that matter.

Moving Heaven and Earth to help him in any way possible, is the very least that we will do.

As parents though, realistic expectations are important because this is hard enough to powerlessly witness all of this happen.  Being prepared for the what will most likely happen, helps up to better cope.

I don’t know if that makes sense but I’m done.  This really stirred up a great deal of emotions and today’s been hard enough already.

Is there anyone out there who can relate?

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6 Comments on "How many times can one father’s heart break? Too many. The answer is too many. "

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Jimmy Rock
Member
I’m sorry about Gavin’s condition and what he and all of you are going through. I do have a question though — Gavin has CDD, which, as you’ve said, sadly results in irreversible regression. However, you’ve also referred to his periods of heightened delusions and regressions as cycles, from which Gavin ultimately regains his losses. In this post you seem to refer to CDD and the cycles interchangeably. Are the cycles of regression separate and apart from the CDD? They don’t seem to fit in with what is seen, by definition, in the CDD context. From what I understand, CDD… Read more »
Rob Gorski
Member
Okay. I don’t really know how to answer that but let me try. Gavin was diagnosed with CDD within the last year and that diagnosis took about 10 years to get. Gavin has gone through periods where he’s more lucid and firing on a few more cylinders for most of his life. He also goes through periods of time where he simply regresses. Sometimes he will be able to relearn the skills he lost and other times he can’t. We’ve taken to calling these cycles but I guess they really aren’t.. They’re sorta random. The cycles I referred to most… Read more »
Jimmy Rock
Member

No apology necessary, it’s a bit clearer now, or at least as clear as I suppose any of this can be. Thanks for the further explanation. This can’t be easy to navigate through.

Rob Gorski
Member

Thanks Jimmy and you’re welcome.. ☺

Teresa
Member

I can’t relate, but I am so sorry you all are going through this. I cannot imagine how hard it is.

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