The Invisible Disability

This morning is our first day of school.  It's a bit different for our family than it is for some of our friends.  First, our son is on the autism spectrum.  This takes a great deal of planning, scheduling special therapeutic activities and medical appointments, and purchasing special curriculum and learning tools as well as getting on a healthy schedule.  I try to begin putting things together in June or July to prevent that stressful last minute rush to get it all done.  Secondly, we homeschool.  Our brilliant son, can't handle the noise of a public school or the distractions other children provide.  The sound of a school bell or the clicking of a clock un-nerves him to the point he cannot concentrate and he is terrified of large groups of people.

Along with so many other children, our son suffers from an invisible disability.  At first glance, he seems perfectly normal.  But I can't begin to tell you the barrage of questions we get hit with.  A few recent ones include: 

• Why doesn't your son tuck his shirt in? 
• Why does he have a game boy or nook with him constantly? 
• Why doesn't he look me in the eye when he speaks to me? 
• Why doesn't he play outside with the other children? 
• Don't you realize that homeschooling makes it difficult to socialize him? 

Little do people realize that autism spectrum disorders are disorders of the nervous system.  Some children, like my son, experience difficulty with fabric and the way clothes fit.  This makes tucking in a shirt difficult and often painful.  If he is in a crowd and starts to stress out from being around too many people, having a hand held computer device that he can concentrate on helps.  It distracts him from the crowd  . . . at church, at the grocery store, at any meeting or event where he may be safe, but surrounded by a large group of people. 

Most children I have met on the spectrum have difficulty looking people in the eye.  It makes them feel uncomfortable.  And playing with other children outside often means playing by someone else's rules or having an amount of communication or contact with other children that is often difficult or painful for one on the autism spectrum.  There are several disabilities acts of recent years that provide for and support modifications in activities like sports and cub scouts for children with such disabilities. 

I'm not going to make this about homeschooling as I address the last question I mentioned above.  What I will say is that we view the key to socializing our child with a quality as opposed to quantity approach.  For example, he is not playing on a playground lightly supervised with fifty other children.  Instead he is playing on a playground at a park with one other child, highly supervised by one of his parents and a friend's parent.  He may not be in a classroom with 23 other children.  However, he belongs to a homeschool group where he can enjoy the company of other children for a period of 1 to 3 hours a few times a month while on a field trip or experiencing a hands on learning approach. 

I have a few questions of my own. 

• Why are people so oblivious to these invisible disabilities? 
• Where has their compassion gone? 

Our children have a long and difficult road ahead.  Our responsibility is to help them learn to cope as best as possible.  That may not mean that they will ever be like everyone else.  I hope it means that my child will learn to be unique while functioning within society.

What are your hopes for your child?