“Off Her Rocker”

“That woman is off her rocker!”  That was the impression I left on someone once.  I am sure that it was not the first time.  I 'm sure many people feel the same way after they first meet me.  This is just the only time that someone actually confessed to me that they thought that.  Many times, when someone first meets myself and Raymond, he is passively sitting, well strapped into his wheelchair.  He usually is just looking around, sometimes smiling, sometimes not, and sometimes he is just drooling with a dazed look.  And when someone says “Hi” to him, he does not talk back, he usually just smiles.  Well, on this occasion, like many occasions with strangers, she started asking me questions about Raymond.  I love questions by the way, I know people are just curious and I hope to help them to understand his disability and get to know the “real” Raymond.  I proceeded to tell her about our little guy, how he may be severely disabled and medically fragile, but he loves baseball, basketball, playing with friends, watching Spongebob, going to school….etc…etc.  I am not sure exactly what I told her, but I usually talk about our very active disabled child, and I am sure Raymond was still just sitting there.  She was probably thinking….”is she talking about the same child that I am looking at?”

But once someone gets past our first meeting and gets to know Raymond, they begin to see the lively, fun-loving, giggling little boy who is so very observant and outgoing.  Yes, outgoing, can you believe that for a non-verbal child?  Our now friend also saw the “frustrated” Raymond.  She witnessed, as many have, when something is wrong, and Raymond gets frustrated, frowning, moaning, crying out, swinging his arms around and looking right into my eyes as if to scream….” Mom….I need your help!”

Do something for me as you are reading this.  Grab some tape and sit down, if you are not already sitting.  Now, close your mouth and put tape over your mouth….so you cannot talk.  Now, tape your fingers together on each hand, so that you cannot write with a pen or type on the computer.  And while you are at it, tape yourself into your chair, so that you cannot move around without someone to help you move.  Now sit there for just a minute, then try to communicate that you need something, when you cannot talk, cannot use your hands other than to swing them around, and you cannot get up to go to the item or person you need.  You cannot go and get some food, go to the bathroom, lie down, tell someone that you don’t feel well….I could go on and on.  But that is one way to describe our life with Raymond.  Those of us closest to him try our best to figure out what he needs, but he still gets frustrated and sometimes is in great pain.  Our hearts break because we don’t know what needs fixing and we can only guess and try to help him.  Can you imagine not being able to know how to help your child? 

Other times, we see the smiling, giggling, Raymond, or he is in the middle of a huge gasping laugh because I just tripped and he thinks it is funny.  He is a one smart cookie, we have always known that.  But for someone who just meets Raymond for the first time, especially in a doctor or clinic setting, they probably just think we are “off our rockers.”

I know many of you have been following this blog and our trial with the eye-gaze communication system.  There is one video that I took during the end of the trial that I have not posted until now.  I know I am not off my rocker when I say he has proven to us that he now knows how to use the device and has the potential to communicate. Watch him tell me what he needs, and I take it a step further and make him confirm with a yes or no.  We are two months out after requesting a purchase of this device, and still no answer, just waiting.