Mama said there’d be days like this…

Before I can tell him it’s shower time, the boy takes off running down the hall like cat who needed to be in the other room 10 minutes ago.  I hear the tap in the bathtub turn on, then the shower and soon singing and jumping.  He’s just started doing this – taking a shower on his own.   That’s the way he works though….he studies things carefully but doesn’t let on that he can do it until he’s forced out of his comfort zone.  In this case, his diaper was bugging him, and he decided to do something about it.  We’re still working on how to dry off before putting on the fresh diaper and clothes, but we’re getting closer.

Every day brings some progress measureable on our personal scale.  There’s always something he does independently for the first time, or spontaneous communication …some little thing.  That is what keeps me going…going….always going….some days only going in circles at a breakneck speed wondering if we’re actually heading to something or running away from it.

I’ve always hated the inspirational metaphor that having a special needs child was a lot like heading for Italy but landing in some other place because it makes me feel I should embrace whatever I’m handed with a smile and a can-do attitude and any disappointment or regret or grief is wrong or bad – that I should be attached to the outcome assigned to him – That it’s okay that others get to go to Italy but I don’t – That I should feel blessed and lucky to be gifted with a special child – That if I stay there long enough and I work hard enough I’ll earn that trip to Italy.

…That it’s my fault….

Like the cake, Italy is a lie.  We’re all on the spectrum.

This journey has no destination.  May as well just settle down and really enjoy the ride.










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Pearl Manhattan

Life interrupted - this space is changing - stay tuned

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