Monday, January 16, 2012


Here's a video a friend of mine sent me.  I hadn't seen the original clip, but I have heard about this girl.  It is amazing to me, and heartbreaking.  I would love to think that Anthony will communicate like this with us someday.  I really have no reason to believe he won't, he is obviously a smart person, and you can tell that he is just so, so affected by his sensory issues that he can't talk.  He's so smart that he finds ways to not do it.  Like, lately he's been talking a lot (for him) at school but his volume is bad.  It seems sneaky but I think he is trying to please us or his therapists and also do it in a way that is comfortable for him.

When I think about how he might feel like there are bugs crawling on him, or that he might feel like the top of his head is going to blow off, I want to just - I mean, it kills me, I can literally feel it hurting me.  I would gladly take it away if I could, obviously. If I had to feel that way every day for the rest of my life, I would, if it would relieve him.  But that is a B.S. claim, because I can't.  What I can do, I hope, is try and figure out how to make him feel better in  a way that works for him, in the world.  It is so, so much trickier than it sounds!

Also, a complaint:  the reporter asks the father what it's like to 'meet' his daughter, once she starts typing to communicate.  This hit my ear the wrong way, because, um, they've met!  I've MET Anthony!  I KNOW Anthony!  I might not know every thought he's having or exactly what is going on in his brain, but BELIEVE ME, I don't know what's going on in Maria's or Veronica's or Felicity's brain either and I know them!

But mostly, I find this video extremely inspiring.  It makes me want to keep trying and pushing and trying and I know something will open up for us someday.  I always think of Anthony as being SO OLD because he's the oldest, but he really is just a little boy, still.  There is always time.  There better be!

1 comment:

RZenor said...

Joanne I believe this could happen... Working with Anthony I felt a vibe from him that I didnt feel from other children I worked with. This vibe I got was hes trying to figure out how to communicate with us if it is postive or negative. By introducing his Ipad made just a lick of difference. when I would bring that out a sence of calmness came over him and he would focus on what he had to do next with it and that was to swipe it to turn it on...I dont know where he is now with that but that is a big step. Like this girl in the video maybe its his age who knows if in just a few years he might be just like her...Dont give up, you and Mike are doing an amazing job and I really enjoy reading up on him on this blog since I dont get to spend it with him like I did:)