Thursday, July 19, 2012

Walking a Tightrope


I really do try and keep things upbeat and positive here and other than a few weak moments, I think I do a fairly good job of that.  I'm giving you fair warning that today is NOT one of those days.  So please don't beat me over the head as I'm already feeling pretty beaten down. :-)  And I absolutely trust God and know He is in control of all this.  That, however, does not negate my feelings at times.

I feel like I'm on a tightrope all the time.  One false move and I will plummet to the floor below.  It's called the tightrope of being a mother of a child with disabilities.


I'm frustrated for my son.  Nathan turned 21 at the beginning of May and has been finished with school since June 23rd.  I'm frustrated because he has a disability, in fact multiple disabilities, but doesn't fit anywhere in the "system".

We have an agency working with us who is supposed to help him find a job.  So far they have come up with a hundred different types of jobs he could do based on his interests, helped him write a resume, and helped him practice an interview.  But every time we meet they send him on his way with a couple of job leads and tell him to call them back after he applies for the job.  Yesterday, they basically told him, "Your 21 and no one is going to hold your hand."  "You need to search for jobs yourself."

There was no talking to me about any of this.  In fact, he showed up in the waiting room and told me he was finished with his appointment and then on the way home told me all this information.  I don't know how much was misconstrued or actually said.  I am going to follow up with a phone call but I need to wait until I can formulate my thoughts better.

They are right.  He is 21.  He is an adult. But he is an adult who reads at a 5th grade level and writes at even a lower level.  He has difficulty navigating on the computer and calling and pursuing job leads is also not in his range of comfort.  I don't stand over him.  I let him do much on his own.  I do want him to be independent, but the reality is he needs help with certain tasks.   Not everything.  In lots of ways, he's very independent.  But certain things.

One of the jobs they gave him to pursue was in a town across the river, almost an hour away.  Do they understand we have two cars and next to no money?  Do they think about the logistics of getting him to work each day if he does get the job?

Then I'm also on a tightrope with how I respond to Nathan.  I feel horrible even saying this but things would almost be easier if he were lower functioning.  He certainly would get more and better services.  He would not know that he is different.  He wouldn't long for all the things that he feels he'll never get.

His entire body language changes when we walk into this agency.  He gets sullen and angry and tightens up.  Yesterday, as we waited for his appointment a group of developmentally disabled young adults walked by.  Most looked about Nathan's age.  I looked over at him and his face was hard and angry.  I knew what was going through his mind.  He doesn't want to be perceived that way.  Each time we go there, it's another reminder and fear that others will see him as "disabled."

Last night, the anger and hardness cracked and softened for a while as he poured out his heart to his Dad & I.  He doesn't want to be different.  He doesn't want a disability.  There is a young man on the fire department who is mentally disabled.  Nathan constantly lives in fear that others will look at him and compare the two of them.  Which is exactly why he doesn't want to be around others with disabilities, as cruel as that sounds.

Of course, I talk to him about how God has a plan for him.  I encourage him to stop wasting energy on wishing he didn't have a disability but spend his energy on achieving his goals "despite" the struggles.  But it doesn't change his daily dealing with it and the hurt and disappointment he feels.

I have questions for the agency we are working with but I always have to watch my words around Nathan.  He is fragile about this area of his life.  One wrong word or statement pushes his already very shaky view of himself over the edge.

There are times I could really use a giant-sized bear hug and someone just to say, "I love you."  "I'm praying for you."  Often I get stares and no response when I do share.  I understand why.  It is hard to know what to say when you aren't dealing with it on a day to day basis.  I know that.  But I still could use a hug! :-)

Some days I feel like I'm teetering badly.  Other days things are better.   I generally catch my balance and push on but I do have to say that it's tough being on that tightrope.