Blog entry #3

“How did you decide to do this for Matt?”

No story about Matt is really a short story but I will try.

When Matt was small we worked very hard to help him acquire skills that would help him in his adult life.  Our spoken goal was that we wanted to make him a taxpayer.  We joked about how our goal was to get him enough skills that he would have the label “Aspberger’s” a much more functional end of the autism spectrum.

Well…we failed.

Despite our efforts to help him adapt to group settings, at 26 years old it is still overwhelming.  When he is overwhelmed his ability to listen and understand goes from poor to zero.  His entire school career he rarely learned anything new except in a one on one situation in a quiet environment.

For years Matt shared a room with his brother, until he didn’t.  He made it clear in very few words.  “You go to that room.”  He refused to let his brother sleep in his room.

Matt has sensitivities that are totally different from ours.  I can remember Matt sitting in a highchair in a McDonald’s when he suddenly changed from a happy baby to a baby with a pouty lower lip and tears in his eyes for no apparent reason.  It was years before we learned, with the help of Leroy the barber, that people coughing are a trigger for Matt.  He was tortured if his brother coughed in his sleep.

Who could imagine that hearing someone cough is painful?  Matt is unable to really tell us, he parrots phrases we have taught him, but he hears every little throat clearing noise in the area, that I never would have noticed.

He is anxious in gatherings.  It must be like standing in a mine field expecting an explosion but not knowing where it will happen, just knowing it will, and knowing it will be any second.

Cars starting is another one.  As a baby and toddler he would scream with the starting of the car.   Both cars starting and coughing are concussive sounds.  Is there something about concussive noises for Matt’s hearing?  Who knows?

Sneezes are funny.  Yes, Matt acts as if sneezes are funny. How are sneezes different from coughs?  I can only guess that he gets a little warning that a sneeze is coming with the little inhale that comes before the “Ah Choo!” is not a surprise.  Maybe it is such a different sound to him that it is not painful.  I don’t get it.

We have a family of just the four of us.  Matt’s adult brother has moved out and when he visits, Matt can enjoy him, but even that increase in people is enough to make Matt more agitated.  Already with just three of us he sends one of us away to another room so that he is one on one.  He is most comfortable and interactive one on one.  When he Is overloaded, he is no longer in control of his communications or actions.

One piece of the housing puzzle was clear.  A group home would not work out because of a constant state of agitation in that setting. What other options were available?