The Plan Changed, but Not the Goal

Having a young man with multiple disabilities means that our lives are different. Everything I planned and dreamed for my child as a baby had to be put aside. And because Nathan is so high functioning in many ways I often forget the severity of what we are dealing with.  And I often think people assume I'm exaggerating because they can't see the things we deal with here in the privacy of our home.  Or because they haven't ever had to deal with it themselves, they kind of feel like he should just "snap out of it."

Tasks that you and I take for granted don't come easily for him.  When he was tested a number of years ago, his processing speed and working memory dipped way down below the average range.  His reading, writing and math skills are very low.  All this means that learning new things does not come easily or quickly.  

I forget how much energy it takes him to just manage a job and having to do multiple tasks.  I often think he's being lazy when on his day off he wants to do nothing but vegetate in his room, playing video games ,but the sheer effort it takes for him to manage his job expends much of his energy.

Then when you take into consideration that he works very hard to keep his tics under control from Tourette's Syndrome, that social settings and crowds are hard for him, and the fact that he almost never can breathe through his nose because of allergies, it's no wonder that he is wiped out.

He's been withdrawn lately and Dan and I sat down to see if we could draw him out.  He said, "I'm just struggling trying to figure out where I fit in this world."

Our conversation was a good reminder to me that our future will not look like our friends. Nathan is with us wherever we go.  We do have to think about him when we make future plans.  Right now he is in a job he really likes.  They are good to him and he is making friends there. His coworkers ask him to come out with them. But he longs to be full-time and I'm not sure that will ever happen.  I know that his managers realize he has disabilities because the agency for adults with disabilities helped him get the job.  Nathan often wonders if that's what holds him back.  He never knows.

I felt sad the other night as Nathan was sharing with us. His life is hard and it's not what I wanted for him.  I tend to get sidetracked with my own life and because he is older and independent in many ways, I forget how much he struggles.  I don't always understand how God can allow one person to struggle so much, but I know He has a purpose for all things.  Nathan has a good attitude, is kind, works hard and wants to live a productive life.  

Life didn't work out the way I expected and my plans changed, but the goal I had when I had children remains the same.  I have a wonderful son who is an inspiration to me.  What more could I ask for?