dis-AB ILITY, Storms, and Singing

People with disabilities are awesome.  In my blog from Feb of this year  (“Titanic”) I told you about Dave, the autistic guy I work with.  He is an amazing teenager.  I learn something new every day I am with him. My niece, Christy, who has downs syndrome is one of my favorite people.  She is sweet but sassy, actually a little like her mom:) (my sis). She has a busier social calendar than I do, and kills it during Special Olympics.  A more stellar person does not exist on this earth.  When my dad was still alive, He and Christy would hang out and watch TV while sharing a whole carton of ice cream with each other.  

Christy IS a Cutie!

 Christy thought that was a major SCORE- time with Grandpa AND ice cream!She could wrap grandpa and lots of others around her little finger with a smile!... People usually do pretty well with folks who have obvious disabilities, blindness, Cerebral Palsy, Downs Syndrome, or Autism.  The disability computes, they act accordingly.

But what about those who fall through the cracks? To look at them and talk for a minute or two, they seem normal.  Then after a few minutes you are thinking to yourself  “hmm…something is not quite right”  They are the ones who always say the wrong thing.  The girl who zigs when everyone else zags.  The guy who invented the word:   “AWKWARD”   Years ago when Tim was working with disabled children- they had an unofficial diagnosis call FK-  “funny kid” when they could not quite put their finger on the problem.  Not really disabled, (not enough to get social services, anyway ) but yet not “normal”.  ODD… STRANGE….

ASPERGER’S DISORDER

Asperger’s Disorder is a diagnosis that has come to the forefront in the last 20 years. In diagnostic manuals it is characterized by many of the above things I just mentioned, especially social awkwardness , and not “getting” social cues. Kids/teens with aspergers disorder are the ones who get left out on the playground, no one wants to sit with them at the lunch table, they do not get asked out on a date, teachers scratch their heads not really knowing how to help, and there are no awards, accolades, or honors. Usually they are loners- because no one really gets it.  Because Asperger’s  is a fairly new diagnosis, it is unclear what will happen into adulthood, in terms of living a normal life. For more detailed info here is a link:

http://en.wikipedia.org/wiki/Asperger%27s_Disorder 

RUTH

I know about Asperger’s firsthand, because I have lived it. My sweet and wonderful daughter Ruth got diagnosed with this disability when she was 12 years old. Actually SHE has lived it.  She was “that kid” described above.  Her dad and I know a bit about disabilities because of our professions, and  have tried to take things one day at a time. As she was growing up, we were not sure about many things, learning to drive, graduating from high school, going to college, were all question marks in our brain.  

 STRUGGLES

 To be honest there have been many struggles.   Ru is not “disabled” in the true send of the word, but yet struggles to live a “normal” life.  She is one of those “in-between" people. Not taking anything away from people with severe disabilities, sometimes I wonder if being in-between is just as hard, simply because of its ambiguity.    I once had a 5^th or 6^th grade teacher of Ruth’s tell me “all of the kids can tell she is strange, that is why they avoid her.”  That was the only time I cried during a teacher’s conference. It was either cry or punch that woman in the mouth.     However, there have been too many triumphs to measure.  Ruth did learn to drive, and is an excellent driver.  She graduated from high school, and last year got her degree in Human Services.  The whole last year she has been looking for a full time job, and just yesterday she got hired as a teacher assistant in a pre-school/daycare center.  We are so proud of her we could burst!

Graduation from Wingate University last year

Ruth as a young teenager singing

 Still, to be honest with you- people don’t get it, and to be more honest they don’t try to.  I don’t discuss Ruth and her struggles a lot with others, because they tend to give advice that is not helpful. When Ru was going into her freshman year of high school I had a friend advise me that maybe Ruth needed to go to a different high school where she was not known and maybe kids would not consider her odd. Maybe she could “start over”.   My friend was well meaning, but did not get it.  Wherever people with disabilities go, the disability goes with them.  It does not take a break or stay at home. Lots of folks give lip service to supporting people with disabilities, but they really don’t do it.  This last year as Ruth looked for a job, it was a struggle to be sure.  It has been a struggle in this economy for ANYONE looking for a job, let alone someone with a disability. Ruth bravely applied for job after job, never giving up.  If you really want to understand folks with disabilities here are some things you can do:

1.EDUCATE YOURSELF-the internet has a plethora of information on asperger’s disorder and any other disability you are interested in.

2.If you own a business, or are a supervisor, HIRE someone with a disability, even if they seem a little odd.  They could turn out to be the best and most loyal employee you have.  I will be ETERNALLY grateful to the people at Christ Community Development Center for seeing beyond Ruth’s “surface strangeness” to her brilliance that shines through if you are actually looking.

3.Treat folks with disabilities like you treat anyone.  Don’t talk down, don’t pamper, don’t placate. Try talking to someone with a disability for 30 minutes.  You might be uncomfortable, it might be awkward, but YOU will learn SO MUCH!

OUR OVERPROTECTIVE GOD

So… if you are reading this you might be saying to yourself “these are the musings of an overprotective momma’s heart” ...and you would be correct.  I am working on letting go of my protectiveness.  We as a family have weathered many storms having to do with asperger’s disorder.    I am so thankful to my God that he has brought us through them to victory.  I am also so thankful that He will continue to be overprotective of my sweet girl who is now a woman with a full time job.  I know He has a momma’s heart toward my Ruth, and others with disabilities. 

THE FUTURE?

We and Ruth wonder what the future holds-- if it will include a guy being able to see through the “stuff” to her shining fabulousness.  Whether it might include a family of her own… I am confident of this:  Her God will protect her through the storms to come- and they will come, for the rest of her life.     Understandably, Ruth is a little sensitive about her Aspergers, so I want ya’ll to know I ran all of this by her to make she what I said was OK with her.

I know this blog has been longer than most of my blogs, but if you have stuck with me to the end, you are in for a treat!  One of Ruth’s many talents is singing.  She is a fantastic singer, and has been doing solos in church and elsewhere since she was 10 years old.  Nowadays she likes to record songs and put them on her fb account.  Below is a link to her latest song about Easter, she is singing to her Savior, He IS RISEN!

 http://www.facebook.com/video/video.php?v=3361923720785

Finally, I want to tell you about a wind Chime hanging from my back deck:) All of the chimes have disappeared, due to the storms they have weathered, but the main plaque of the wind chime is still intact.  It has a picture of a bird and it says:

“After the storms, the birds sing… why shouldn’t we?”