The painful truth about my son's condition - Page 3 of 3 -

The painful truth about my son’s condition

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.

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I’m so sorry. πŸ™


I’m so sorry. πŸ™

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