Tuesday, November 11, 2014

Levi is not a special needs child. He is my son.

I read an article the other day that was shared by a friend on Facebook.  It was an experience a woman had with her son who has Down Syndrome.  A cashier at a store gazed upon her son and said “I bet you wish you had known before he came out. You know they have a test for that now…”  You can read the article here. I have to give the women credit. She handled the situation well by using her sarcastic wit.  There are many different ways this could have gone down.  If I were put in a similar situation, I am not sure I would have shown such restraint.

Her point is well taken.  She didn’t see her son as a disability.  She saw her son as her son.  This is exactly the same way I see Levi or my two girls for that matter.  Sure, there are many daily extra things we contend with such as therapies, stretching and putting on braces.  It can be difficult at first but eventually you settle into a routine.  Taking Levi to Therapy really isn’t any different than taking the girls to dance class.  It’s just something during the week that we do.

Levi’s Cerebral Palsy doesn’t define him. What defines him is his lovable personality.  That big smile he always has on his face.  His excitement and anticipation as he tries a new experience.  His love for the outdoors.  His little comedic side as he tries to make us laugh.  His love of music. He is just a sweet little boy and that is how we see Levi.

Thursday, November 6, 2014

Inclusion is a state of mind

We recently took Levi roller skating as part of a school function.  You could see the excitement in his eyes as he walked through the door. Between the music and the lights and all that was going on, he was ready to take the night by storm.  We got him a pair of skates that fit over his shoes and braces.  Then we rented him a trainer which is a some PVC pipe in the shape of an L with wheels on the bottom.  This gives the kids something to hold on to that rolls while they are skating.  With that we hit the floor.

The first few minutes were a little a rough. Levi was throwing all his weight over the top of the trainer which made it top heavy.  I had to hold it down to keep him from going over the top.  His feet were everywhere as he struggled to keep his balance.  Finally we found a rhythm.  Levi would hold on to the trainer and lean back.  His feet would go forward just under the trainer.  He would lock his legs and that kept his feet nice and straight.  From there, I was just able to push him around the rink. He was loving it!

This was a major milestone for both of us.  Levi has worked so hard and come so far from a physical stand point.  He is now able to get himself into a standing position without holding on to anything.  He is able to stand unassisted for long periods of time.  And of course, he is now walking around the house.  He still holds on to things but in most cases, he doesn’t need to.  It is just easier for him.

For myself, I have come a long way in my thinking. In the past we have often gone back and forth on whether or not we should include Levi in something.  Should we take him to the latest kids movie?  Should we sign him up for sports?  We always struggled to predict what the outcome will be.  Will he sit still in the movie theater for that long?  What would he do when we stick him out on the soccer field? How will the other kids treat him? What we have learned is that we are usually completely wrong in our predictions.

One of Levi’s best attributes is his passion for life.   Carpe Diem!  Levi just wants to enjoy himself and take part in what everyone else is doing.  He lives to try new things and that is a really great thing.  If you stick him out on that soccer field will he even be able to kick the ball?  The answer is, who cares! It is not whether or not he will be able to play soccer, it is about him running around on the field with the other kids. Being part of something. Having fun and trying new things. At the skating rink, Levi didn’t care that he couldn’t skate.  He just enjoyed being out there. We really don’t know what he can accomplish until we try.  As a parent, I need to do a better job of giving him the benefit of the doubt.