A New Reality concept!!!

Yesterday a friend mentioned that our lives as families with special needs are sometimes like a bad reality TV show….we can’t be voted off and we won’t win a million dollars, but our lives are crazy and dramatic and you can’t make up some of the things that our kids do!!!  In response to her comment I posted a somewhat sarcastic post to FB….there should be a Survivor – Special Needs…..put 25 unsuspecting people in a house full of special needs kiddos and let ’em go!  Which group will outwit and outlast the other??? 

To be honest, those of us with special needs kiddos must have a sense of humor to get through it all.  When your 9 year old with autism poops on the floor, what else can you do?  And a lot of our humor comes out in sarcasm and when one of us comments with sarcasm, the rest of us really get it.  I started thinking about where we want our sarcasm to be heard.  Really, our friends and family, the ones who are in the trenches with us, get it…..  Some of our outer circle of friends get it…..but I for sure don’t think all of our friends/acquaintances and especially the “professionals” get it.  Nor do the people at the insurance company or at the government offices that decide who will receive services.

I have a friend that has a term she uses… it’s “mugwump”.  She defines this person as someone whose education surpasses their intelligence.  These people might have a lot of letters after their name and may know all the theories, the studies, etc., yet they don’t have the experience or common sense to back it up. They don’t know what it is really like to live with a child with autism, or down syndrome, or cerebral palsy.  And they talk with big words and tell you what really won’t work despite the anecdotal stories you have heard from many parents that have had results.  They put limits on our children and their potential. 

I think that it is the “mugwumps” of the world that I would want to be on Survivor-Special Needs.  The mugwumps and the executives at the insurance companies that won’t pay for therapies or medications that children with special needs need to be successful.   I’d love for some politicians to be on that reality show as well!  The rest of the world needs to walk a day in our shoes to understand what our daily lives are like, what kinds of things our families need to make our lives easier and the things that our kids need to grow up and become successful

I believe that our sarcasm comes from our frustration that not everybody “gets it”.  They don’t have to get up at the crack of dawn because their child won’t sleep or have to run circles around themselves to keep their child from having a huge meltdown in public.  They don’t understand why we can’t just go and do the things we want to do, why we have to tag team….you do this with him while I go take care of this.

Don’t get me wrong……I love my child and we have settled into our kind of “normal” and life with him is sweet.  But I do think that it would be nice if the rest of the world could walk in my shoes for a day…..or even one of my friends’ shoes.   If the whole world could get a taste of what it is really like…..and what better way than on Survivor – Special Needs!!!!! : )

We Are Not Invisible

Often, when Tanner and I are “out in the community” I tend to be so focused on what we are doing and on his behavior, that I often forget that people watch us.  I sometimes think we are invisible.  When Tanner is having a meltdown or making a fuss, I do notice other people’s reactions, but when he is calm and we are just going about our business……I really don’t notice that people still notice him.  It’s not that he is that unusual looking, but there is something about him that lets others know that he is different.  Especially now that he has gotten so big. 

Today we were at the children’s haircut place that we still go to because he can watch a video while getting his hair cut.  We have gone to this place forever and despite the fact that the price is astronomical, Tanner is used to it and that makes it great!  I was so busy keeping him still and focused on a video (that wasn’t working) that I didn’t notice a woman until she walked right up to me and asked me where he went to school.  She is a diagnostician for the Lewisville ISD, which is our district.  She was very friendly and persistently tried to interact with Tanner.  We chatted about people we knew and all that small talk stuff.  But what was touching to me was that she was interested in Tanner and trying to make a connection with him.

Most people don’t really try to talk to him.  They will talk to me ABOUT him, but not to him.  It takes effort to talk to Tanner if he doesn’t know you.  Your voice is not familiar to him so he is less inclined to give you the time of day!  Your face is not familiar either.  But if you try really hard….he might answer your question.  And this is very important.  Tanner needs to learn interactions with all kinds of people in all kinds of social situations.  This is why I take him just about anywhere these days.  He is so much more mature and if I tell him what will happen, he is more likely to respond favorably to new things.

When we do something new, I always say there is a 50% chance of total failure or a 50% chance of total success.  But if you never try….then you will never experience the sweet, sweet joy of success.  And we have had such joy by trying new things! 

So once again, I am reminded that Tanner is a child of God and God wants others to know Tanner.  I am also reminded by God that I am not alone in this journey.  We are NOT invisible!!!