Sunday, April 12, 2015

Yearning Subsides

I used to YEARN to find information about Matthew's rare chromosome duplication.  I NEEDED to know everything I could about what was to come, what we might encounter, and what life might be like for Matthew.  

Now, 5 years after Matthew's diagnosis, I don't yearn for the information like I did before.  Probably because I now know Matthew.

I enjoy meeting those impacted by a 4q duplication.  But while their journeys are somewhat similar, they are also very different from ours.  Each story is uniquely his or her own.  I know there is only one Matthew.

When I first started teaching this year, I'd look in the special education department to see if I could envision what life might be like for Matthew years down the road.  Similarly, I have realized that there are no Matthews.  The school system has likely never seen anyone exactly like him, because there is only one Matthew.

That knowledge used to make me a bit batty, but now it is almost comforting.  We don't know what to expect.  No longer scary, it is empowering. 

It will be a challenge assessing what Matthew knows, given his speech and OT issues, but I have no doubt this kid will figure it out given enough time.

When he wanted the truck out of the way, he tried to push it out of the way.   Matthew doesn't realize he has limits.

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