Carrie Fancett Pagels - Overcoming ASD One Step at a Time

The Bus Ride in Charlottesville

We’d made it through five years, numerous doctors, over three years of occupational and speech therapies, diagnosis of ASD, special education pre-school program, and medication to manage the severe tantrums. And we had a new normal—absent the screaming melt downs and bizarre behaviors. Then Sissy went to college.  Some setbacks. But that was about to be remedied—Sweetie Boy and I made a road trip to the college. My little fellow sat in the back of the van, watched videos, talked with Mommy, and even stopped to go to a fast food restaurant on the way. Whew! Was breathing a sigh of relief.

We parked and found our way to the International dorm, where our then 18-year-old daughter stayed her first year at the University of Virginia.  So far so good.  She suggested we try a couple of kid-friendly activities in downtown Charlottesville and said there was excellent bus transportation.  So we walked to the corner and got on the bus.  Which was crowded. And loud. And strange. Sweetie Boy clung to the two of us.  We got to our stop and walked to the Children’s Museum, which he enjoyed. Then went to get something to eat.  By now Sweetie Boy was getting tired and not so sweet.  Time to head out.

Return trip, crowded, loud, strange, slightly smelly, and loaded with people who stared at my little guy whenever he did anything slightly different from what five-year-old boys were supposed to do on a bus. My daughter became silent. Honestly, I don’t even remember what all of his odd behaviors were back then, but probably some repetitive stereotypic behavior was happening.  And I kept thinking—he’s been doing so well! Our new normal, though, wasn’t good enough for this college town crowd. We got off the bus discouraged and went to get our van.

Except that as I approached the van, someone else’s car was hanging off of it in the garage, literally.  A teen driver pulled in too close and got his vehicle hung up on mine.  So I have a five-year-old child with ASD who has just had a trying day and who has to be watched unceasingly who is in a garage with all these cars going through and a police officer trying to get things straight.  I was ticked.  Someone’s split second decision to pull into a too tight space was now about to blow the top off the rocket that had a slow burn going all day.  I sent Sweetie Boy outside with his sister and urged her to not take her eyes off of him for a second (he was a runner). Two hours later we finally hit the road.

 

Any parent of a special needs child should be able to relate to what I am talking about. It’s that reminder that all the improvement isn’t good enough for the world. That problems are still there. But sometimes we need that reminder so we don’t have expectations that are too high.  I needed that reminder then as we began our new school year and adjusted to changes at home.

What about you?  Do you have a loved one with special needs?  How do others react when your loved one doesn’t behave according to their expectations?