This week was Javy's Spring Break. I'm still lame so we had to be kind of creative with new things to do. We played with his iPad, we danced to Pandora, did yard work, mostly playing with the hose and his grandma bought him a new toy.
I'm not sure what it's called but he loves it. The only problem is that it rubbed the skin on his feet raw, even with socks on. Its a great way to get him on the floor without having to worry about getting him back up.
One blessing that has come out of me not being able to just pick him up, is that we've been able to transition him without picking him up. It takes some patience, but he will bear his weight and stand up when we need him to. We only lost him a couple of times to the floor when he decided to let his knees give. It's tough but I just leave him there, until he decides to get up on his knees and try, again. Tonight, I got him into his big wheelchair, alone, without picking him up. My plan is that we will no longer pick him up, even after the doctor releases me from any weight restrictions and I can pick him up.
One of my greatest personal fears is that people will underestimate him. I didn't realize how potent this fear was, until I was talking to his doctor at his 11 year old check-up. I asked the doctor if there was any way to test his brain and its understanding. IQ tests are insufficient and I don't think any value should be placed on them. He's going to start middle school next year and I don't want to make the same mistakes that I've made in the past when I expected other people to just discover on their own what he is actually able to do. So the wise Dr. Raelson asked me if I had ever considered getting him a power wheelchair and I'm like, okay, this is off topic. But I told him no, he couldn't do a power wheelchair with it's little controller. His hands are too spastic. Besides he can push his wheelchair, just fine. Dr. Raelson got all contemplative and said so you're tell me, he'll push his wheelchair, deliberately, from Point A to Point B. Yeah, if he wants something. Then why can't he utilize a power chair and if he can use a power chair then he can expand his world to all the technology that comes with a power chair. Then he'll have more capabilities to show that he can understand. Oh crap, I was underestimating Javy. That conversation kind of gave me a jolt. The iPad is great for giving him an outlet and I've stared looking at it as a way to open up his thinking that communication is the way to express to himself. But if he can pick up one small piece of Kix cereal off the table, which I've seen him do, then he can do more with his fine motor skills.
Javy's week ended on a most excellent high note. He got to go surf with his buddy, Kevin. The weather had been pretty crappy but it cleared up long enough for us to enjoy the north shore. I don't Kevin will mind if I tell this story, but I probably can't tell it as well as he did. The turtles, who normally scatter when the surfers come, did not scatter when Javy came. They just poked their heads out of the water to get a good look at him. Javy is very peaceful and they saw no threat in Javy. To quote Kevin, "He is one special boy." This time, Kevin was along for the ride.
One blessing that has come out of me not being able to just pick him up, is that we've been able to transition him without picking him up. It takes some patience, but he will bear his weight and stand up when we need him to. We only lost him a couple of times to the floor when he decided to let his knees give. It's tough but I just leave him there, until he decides to get up on his knees and try, again. Tonight, I got him into his big wheelchair, alone, without picking him up. My plan is that we will no longer pick him up, even after the doctor releases me from any weight restrictions and I can pick him up.
One of my greatest personal fears is that people will underestimate him. I didn't realize how potent this fear was, until I was talking to his doctor at his 11 year old check-up. I asked the doctor if there was any way to test his brain and its understanding. IQ tests are insufficient and I don't think any value should be placed on them. He's going to start middle school next year and I don't want to make the same mistakes that I've made in the past when I expected other people to just discover on their own what he is actually able to do. So the wise Dr. Raelson asked me if I had ever considered getting him a power wheelchair and I'm like, okay, this is off topic. But I told him no, he couldn't do a power wheelchair with it's little controller. His hands are too spastic. Besides he can push his wheelchair, just fine. Dr. Raelson got all contemplative and said so you're tell me, he'll push his wheelchair, deliberately, from Point A to Point B. Yeah, if he wants something. Then why can't he utilize a power chair and if he can use a power chair then he can expand his world to all the technology that comes with a power chair. Then he'll have more capabilities to show that he can understand. Oh crap, I was underestimating Javy. That conversation kind of gave me a jolt. The iPad is great for giving him an outlet and I've stared looking at it as a way to open up his thinking that communication is the way to express to himself. But if he can pick up one small piece of Kix cereal off the table, which I've seen him do, then he can do more with his fine motor skills.
Javy's week ended on a most excellent high note. He got to go surf with his buddy, Kevin. The weather had been pretty crappy but it cleared up long enough for us to enjoy the north shore. I don't Kevin will mind if I tell this story, but I probably can't tell it as well as he did. The turtles, who normally scatter when the surfers come, did not scatter when Javy came. They just poked their heads out of the water to get a good look at him. Javy is very peaceful and they saw no threat in Javy. To quote Kevin, "He is one special boy." This time, Kevin was along for the ride.
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| Javy and Kevin |
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