AND THAT'S A WRAP

It's the last day of SMA Awareness Month. I didn't exactly live up to posting something each day. Of course now I can't remember if that's what I said I was going to do or not. But hey, give me a freakin' break, will you? Stuff happens. I get busy. I like sleep. Blogging doesn't get done. Actually, I think Colby and I do a good job spreading awareness just by living our lives. I guess it's extraordinary to some; it's just habit and the way it is for us. Respiratory treatments, g-tube feedings, suctioning, doctor and therapy appointments, hauling at least 5 pieces of equipment around every single place we take Colby, home health nursing and dealing with insurance and/or Medicaid and/or ordering supplies on an almost daily basis is what it takes to keep Colby going. And I've always been an open book when it comes to Colby's diagnosis. Actually I encourage questions. How else can you learn unless you ask? So if you ever have an questions about SMA, ask me.

Let's talk about Colby for a minute. The sweet, funny, stubborn, handsome joy of my life. Colby has been given many opportunities to become more independent. He has had a power wheelchair for years. We've experimented with many different switches and ways for him to drive his chair. The system we have works very well. Colby uses his left thumb to start and stop the wheelchair. He watches this little box up front with an arrow. Whichever way the arrow is pointed is the way the chair will go. Colby is extremely accurate doing this. However, he chooses not to drive properly. That boy wouldn't drive straight ahead if you begged, asked nicely, asked mean, threatened him or any other means of him following directions. Trust me, I've tried them all I don't know how many times over the years. Same goes for his eye gaze. Colby is very precise in his eye movements and is able to move quickly and accurately through the different eye gaze screens. He can turn on the TV, DVD player, go to NetFlix, get on the internet and go straight to nick.com. He is amazing to watch. However, he refuses, and I do mean refuses, to use that eye gaze for proper communication. For years we've been encouraging him any way we can think of to use proper greetings when people come over, ask for what he wants to do, use the eye gaze for schoolwork, etc. He flat out isn't going to use it for communication needs. He'll tell jokes. He'll change TV channels. He'll get on the internet, but he isn't going to tell you what he wants or needs. Like I tell him all the time, it's a good thing he's so stinking cute!

I struggled with Colby not wanting to be independent for a long, long time. I would think how can I motivate him? Every teacher and every therapist who has ever worked with Colby has asked me the same thing. The bottom line is Colby doesn't care to be independent. He doesn't care to express his needs. He doesn't care to drive somewhere on his own. It would drive me crazy. I mean absolutely cra-cra to the point I would cry, cuss, cry some more. Then eventually I was like, gal, you have to let this go. And I told Colby, all this equipment is here for you when you're ready to use it. I figure if the day ever comes when we wants to go around the block and he's driving his wheelchair, he will. Or if he needs/wants to tell us he's bored, or hot or whatever, he'll let his know. Doesn't mean I've given up on him. We still hook up the switch on his wheelchair and let him drive around in circles. He uses his eye gaze daily. Sometimes I'll make him work on specific vocab words, sometimes I'll let him fart around and change the TV channels 1000x over. It just wasn't worth the fight anymore. Pick my battles, right? So what I learned from this is what I wanted for Colby wasn't necessarily what Colby wanted for Colby. Quite a revelation.

Will it be different in the future? I sure hope so. If not, it is what it is. Colby is stubborn and controls what he can, the way he wants to control it. And I'm leaving it at that. Good night, all. I'm one sleepy mama and my comfy bed is calling my name.