My family is a bit unconventional. And when I say my family, I mostly mean my mom. I wish I had the photo, but it's probably at my brother's house now. It's a photo of me on the first day of school, I think first grade, with my hair in pigtails and my fresh new school clothes. I'm holding a lunchbox. I have this look of disdain on my face, my signature smirk. I know exactly why, I have that look on my face. I hated my lunchbox. It had no cartoon characters on it, it didn't have a cool thermos that I could use the lid to sip my soup with and it wasn't metal. It was a tupperware lunch box with the little plastic square that kept the sandwich fresh, and other assorted plastic things that kept everything so fresh. The practicality of it did not move me, I hated it. Now I would trade anything to have that lunchbox back. This is how my mom was, she didn't care about fads or fashions. She just did what she had to do. Life knocked her down pretty hard when she was about my age now and she rebuilt herself back up. She got things done in her own style.
I'm pretty sure that this unconventional atmosphere that I grew up in, pretty much prepared me to be Javy's mom. Life hasn't always worked out the way I think it should, but I'm always prepared to look at things from every different perspective. And then try different things until we find something that works. I mean, long before Javy ever went surfing, me and Aaron would let Javy roll himself down the steep hill in our driveway, just to hear the pure pleasure of Javy's laughter. Hey, it got him to push himself in his wheelchair. I look at everything from every angle, no matter what other's might think of us.
But I took a pretty long way around, just to say, "I told you so." That's for some medical professionals, by the way. A few years ago, I brought up a diagnosis of autism to one neurologist in Huntsville and one in Oahu. More specifically, it's called Childhood Degenerative Disease, it's on the spectrum and if you read it, it describes Javy to a "T". I was told each time, Javy's too social. The reason I brought it up with the doctors in the first place, was because Javy has pretty severe hand flapping. The hand flapping, in my opinion can make him dysfunctional with basic skills, like eating and grooming, things that he used to do. So when I started doing my own research, I found CDD which describes loss of speech, motor skills and so on at about the same age that Javy lost his skills. But he's too social, he looks you in the eye, is what I heard from the medical professionals.
I recently read in another blog that I follow, "Undiagnosed But Okay", how her daughter was recently diagnosed with autism. Her daughter is also social, but she has hand flapping and the evaluators said that even though, she is social, she only interacts with people on her own agenda. That is Javy, he is definitely on his own agenda. Otherwise, it's impossible to get him to do anything. If Javy wants to do something, he will do it. This has given me reason to keep pursuing what I think is correct. We're scheduled to see a new neurologist that is working at The Shriner's Hospital. I've learned from my past mistakes and I've already started gathering my evidence. I'm going to send a portfolio prior to our visit which will include video footage. The six page questionnaire will not hold what I've got to say.
Now why in the world, you might be thinking, would I want Javy to be diagnosed with something that involves any kind of social dysfunction. Social skills has always been the one bit of normalcy that we could hold onto. But I'm just crazy enough to think that it could open up some doors and give us a piece to a bigger puzzle. I'm just crazy enough to believe that understanding where Javy is coming from can help us to help him. Now I'm going to search E-Bay. I've got to have that lunchbox.
I'm pretty sure that this unconventional atmosphere that I grew up in, pretty much prepared me to be Javy's mom. Life hasn't always worked out the way I think it should, but I'm always prepared to look at things from every different perspective. And then try different things until we find something that works. I mean, long before Javy ever went surfing, me and Aaron would let Javy roll himself down the steep hill in our driveway, just to hear the pure pleasure of Javy's laughter. Hey, it got him to push himself in his wheelchair. I look at everything from every angle, no matter what other's might think of us.
But I took a pretty long way around, just to say, "I told you so." That's for some medical professionals, by the way. A few years ago, I brought up a diagnosis of autism to one neurologist in Huntsville and one in Oahu. More specifically, it's called Childhood Degenerative Disease, it's on the spectrum and if you read it, it describes Javy to a "T". I was told each time, Javy's too social. The reason I brought it up with the doctors in the first place, was because Javy has pretty severe hand flapping. The hand flapping, in my opinion can make him dysfunctional with basic skills, like eating and grooming, things that he used to do. So when I started doing my own research, I found CDD which describes loss of speech, motor skills and so on at about the same age that Javy lost his skills. But he's too social, he looks you in the eye, is what I heard from the medical professionals.
I recently read in another blog that I follow, "Undiagnosed But Okay", how her daughter was recently diagnosed with autism. Her daughter is also social, but she has hand flapping and the evaluators said that even though, she is social, she only interacts with people on her own agenda. That is Javy, he is definitely on his own agenda. Otherwise, it's impossible to get him to do anything. If Javy wants to do something, he will do it. This has given me reason to keep pursuing what I think is correct. We're scheduled to see a new neurologist that is working at The Shriner's Hospital. I've learned from my past mistakes and I've already started gathering my evidence. I'm going to send a portfolio prior to our visit which will include video footage. The six page questionnaire will not hold what I've got to say.
Now why in the world, you might be thinking, would I want Javy to be diagnosed with something that involves any kind of social dysfunction. Social skills has always been the one bit of normalcy that we could hold onto. But I'm just crazy enough to think that it could open up some doors and give us a piece to a bigger puzzle. I'm just crazy enough to believe that understanding where Javy is coming from can help us to help him. Now I'm going to search E-Bay. I've got to have that lunchbox.
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