Archive for May 12, 2013

Autism-Appropriate?

Mona Lisa grinAs I talk to more people and look over the first entries for my new blog, I’ve started to realize that if you are not in my situation, it may sound like I just want to get rid of my son.  Actually, to some degree. it’s the exact opposite.

Yes, I want him to move out.  I want to make sure that he is taken care of.  I want him to be safe.  But I also want to make him as independent as possible.  I want him to have his own life.

When I read things other people have written, I realize once again, that if you are not in this situation, wanting an autistic child to move out may seem unkind or unloving.

People are so, so careful around me when it comes to stepping outside of the safety of an autism-appropriate serious and supportive attitude.  I understand why…I really do.  But hey!  Come on!  This is me!

I was making jokes while posting on Facebook.  On CJ’s 16th birthday, I posted “Happy 16th Birthday!  Should we get him a car or a truck?”  I thought I was hilarious.  (of course, I usually think I am hilarious)  Most comments I got back were super nice.  “Happy Birthday”  “Hard to believe he is that old”, etc.  A couple of brave people made jokes, but I mean only a couple.  One person told me in person that he thought we should get him a motorcycle.  Now THAT was funny!  I complained to a friend that no one seemed to think I was as funny as I thought I was.  She said that “unless you are in that situation, you are not allowed to make fun of (or joke about) that situation. “  I guess she was right.  That’s kind of depressing.

When they are little you tip toe carefully around trying to figure out diagnosis and treatments for other people’s kids.  It’s such a fragile, delicate time.  When they are older, you just say “what exactly is his diagnosis”?  And funny.  By then, people are usually fine with answering questions and almost relieved to talk about it.  They are often craving information as much as you are.

I have discovered that in this world, people are usually more than willing to share information.  Nothing is sacred. People will discuss doctors, medications, Baker Acts, schools, and Therapists without blinking.

But just try to get them to laugh with you.

It is a strange little world growing all too big, but it is my strange little world.

Autism Kicks Off

Challenger Football-Autism Kicks OffOne of the great joys of CJ’s life is sports.  He helps with the varsity baseball and football teams at high school.  The true love of his life is HIS Challenger baseball team.  He has been in heaven since we discovered Challenger.

With Challenger, for the first time he was allowed to play…really play…with his own peers.  These peers are HIS friends.  He talks about them.  He has photos of them in his room and in his albums.  He talks about them and even hopes to eventually live with some of them.

The biggest difference between Challenger and other leagues is that Challenger lets the kids play.  The kids have buddies, but they are high school kids, not adults.  And the buddies are not allowed to pick up or even touch the ball.  The only exception is if a kid can not physically pick it up.  They will then pick it up, hand it to the kid, and the kid will throw it.

When we started, the kids couldn’t do anything. Balls were going everywhere.  Almost everyone hit off a tee.  It was controlled chaos, and one might think, seemingly pointless.  But now, only a small group hits off the tee.  The kids attempt and often complete plays.  When they are out, they are out!  There is no “everyone gets to run bases”.  It’s the real thing.  They love it!  They love tagging each other out.  They learn to deal with getting thrown out.  It’s real ball with real kids and the only exception to the general rules is that, at the end of the game they all “won”, if you ask them.

The buddies are varsity high school baseball players from the local schools.  We have had buddy players who have gone pro and to college on scholarships.  We have several who come back to visit or participate when they are home.  I have seen times when the buddies were getting more out of this than the kids themselves…more than once.  There is something to be said about arriving, bummed about losing a major game, and then watching these kids and spending a Saturday morning with them.  It puts things in perspective.

I have a couple of things I say over and over.  When you have a child, you have the same dreams for that child as everyone else.  It is a boy!  He will play little league!  If he is good enough, he will play in high school.  He shows some early talent, so who knows?  He may get a college scholarship.  And the ultimate dream for everyone would be to play in the pros. Why not?

Then you get “the news”.  One by one your dreams for your child fall away.  There will be no pros, then no college, then no high school.  Little league?  Maybe a “special” team.  You look, and find that no one will actually let these kids play, though.  And then we found Challenger.  Challenger gave back to all of us a little of what we had started to think he would never have.  He has HIS team with HIS friends.  He gets to really play.  He loves it!

The other thing that I say over and over is that if you think the youth of America are going nowhere good, come out on a Wednesday night or a Saturday morning and sit with us.  The buddy’s teams may play until after 9 PM and then will have practice on Saturday morning.  But they still come out with our kids.  They have jobs, girlfriends and are taking tough classes to get into college.  But here they come.  We have had buddies take off of work to come with us to jamborees.  We have had adults rearrange out of town trips to be back for games or so they don’t miss practices.

There are AMAZING kids all over!  And CJ helped me see that.

Terra Incognita

Autism Guardianship HousingI finally made it to the attorney’s office.  You know those snakes that grab and try to swallow an antelope or a crocodile, and they get stuck trying to swallow it down?  You can see it in their expression:  “Maybe this wasn’t such a great idea…,” but there’s no turning back now.

That was me on a sunny afternoon.

You know what they say:  Bite off more than you can chew.  Then chew.