Gavin had a pretty rough day. He’s been struggling quite a bit and not necessarily just behaviorally. He’s made some really good choices recently, as well as some not so good ones.
I think we ended up having two tantrums today. Nothing catastrophic but enough to disrupt everyone.
The other thing we have been noticing is that he’s becoming more and more uncoordinated. He’s walking into things and knocking things over as he walks by. Today alone, he knocked his water bottle over at least half a dozen times, spilling it onto the floor.
His movements are becoming quicker and more clumsy. This is really frustrating for him.
All we can do is remind him to slow down, so we can limit the accidents and avoid him or anyone else getting hurt.
I honestly don’t know what, if anything we can do.
This is all likely part of whatever is going on neurologically and we may never know for sure what’s going on. Speaking as a parent, it’s such a helpless feeling to have to sit back and watch this all unfold, knowing that we have already done everything within our power to help him.
What’s slowly happening to Gavin, isn’t something that is likely to get better and that breaks my heart.
The only thing we have left to do is try to get him out to John’s Hopkins but I don’t know if or when that will happen. The reality is that the most we would gain from doing this, is likely learning only the name or what’s stealing him away.
The unfortunate truth is that we’re dealing with things that simply can’t be fixed. That is truly a tough pill to swallow as Lizze and I will never give up trying to get to the bottom of this.
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