Doing the Research Thing

Because the Monster is a child with Autism, we end up being in a number of research studies.

Some of these studies involve the Monster – they include new tests to see just how his Autism affects him, and tracking to see what he does and doesn’t pick up (and how) in an intellectual sense.

More studies these days, though, involve his little brother.  The baby’s in two or three different studies based solely on the fact that he’s a sibling of a child with Autism, mostly as a younger sibling of a child with a diagnosis.  And this means that, every couple of weeks, we end up getting a sheathe of papers to fill out on our thoughts on how we see the baby developing at home.

I’ve mentioned before, or at least I think I have, that it’s weird sometimes dealing with the baby and how he seems to be developing ‘normally’.  After having spent four years as the parent of a child with Autism, it’s a whole different world when you’re dealing with a child that’s NT.

The baby happily shares attention – if I point to his brother over at the toy bin while we’re sitting at the table, and I look in that direction, the baby usually turns to look that direction.  He’s walking reasonably well, though he’s not yet pushing up on his own, and his vocabulary’s slowly increasing (though he does mix up ‘more’ and ‘milk’, both verbally and with sign-language).  These are all things that the Monster never did at the same age – his shared attention is still behind – and it’s just… weird to me.

So last night, we had to fill out more paperwork for another of these studies… and I imagine that the researchers wouldn’t appreciate my sense of humor most of the time.  We don’t quite keep track of what he has or hasn’t done from month to month, so there’s the scramble to compare notes while discussing what words we’ve heard, what we think he understands, things of that ilk.  The worst part of the surveys is that they generally don’t have a box for ‘No, he doesn’t do this’ – they have ‘almost never’, but not ‘never’.

On the positive side, all these research studies mean that the baby’s getting very extensive monitoring, so if there is something we need to be worried about, we’ll catch it earlier this time…

Leave a Reply

Your email address will not be published.