Ding Dong, Christmas is over!

For my family Christmas means many different things..... And it doesn't necessarily have anything to do with religion, most of the time. And I do say Happy Holidays, but I've always said Happy Holidays, long before this war of words came into play about Christmas time... To me Holidays are about fun, doing things that you don't always get to do. I mean, Europeans call their vacations holidays. It's just a fun word, there's no implied meaning to it.

Getting back to the religion thing, though. Religion is personal. I'm reading a book right now about the Hawaiians. They wouldn't even speak their one true God's name becauseit was so sacred and they couldn't bear to have anyone disrespect it. That is such a different concept from the Protestant churches I grew up in. There's that whole Great Commission aspect of going out into all the world and preaching the Gospel. But I don't think the Hawaiians were altogether wrong, because sometimes the spoken word is meaningless. We can all say whatever we like, but if our actions and how we live, do not match with what we are saying, no one is goingto listen to us, anyways.

And who says that you need to speak or say anything to be a blessing to people. Javy has a very limited vocabulary and only those who are really close to him, actually no how he communicates. But do you know, I've had complete strangers come up to me and tell me what a blessing he was. I had one lady come up to me crying, because there was something in Javy's eyes that reminded her of her recently departed son. I even had a close friend tell me that Javy inspired him to be happy in every situation. Wow! That is truly a blessing....

So getting back to Christmas. I try to make our Christmases special and magical, just like our mom made them for us. This Christmas, we spent time with our friends. We watched whales and the sun sink into the ocean. We played, a lot. And we ate. I invoked the memories of both of my Grandmas. I made biscuits and gravy, just my Grandma Pentecost. And then I made the Strawberry stuff that my Grandma Williams fixed us every Christmas. My Grandma Williams didn't cook much, in fact, my Dad always complained that she starved them when they were kids. But what she did cook was the best. It was a great Christmas and judging from Javy's laughter and smiles, it was magical for him, too.

Merry Christmas, and push your own kid up the hill!

Last Wednesday night, Javy participated in his school's Christmas program with his third grade class. It's great, really, that Javy, as well as the other Special Education students participate with their general education class. I mean, in Alabama, he never really got to, unless it was something that Miss Laura did. So for this, I am very grateful. But here are some general observations that made me go, "hmmmmm." Javy's Special Education teacher was sick so she couldn't be there. So we dropped Javy off with the third grade class and one of the third grade teachers, who Javy was absolutely smitten with, explained that she was nervous about pushing Javy's wheelchair up the hill. I said, Okay, I will help anyway I can, so I can do it. Relief washed over her. Later, when I had a chance to think about this, I wondered, how hard is it to push a wheelchair up a small hill. And do they think that Javy is really that fragile. Now, I don't blame the teacher, at least she was honest. But it brought to my attention something about how people who are not around special needs kids and their perception of them.... For my family, we try to provide the most normal atmosphere possible for him. We let him roll himself down the hill (with an adult monitoring the traffic situation) in our drive way. I let him explore and climb around all the time. I'm not sure how to remedy this because the only way to know is to spend time with kids like Javy. I don't blame people for being cautious. Oh well...I guess that's all of my rant. But here's Javy's Christmas performance.

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You can also find us on Facebook at Adventures in Javyland. I'm not sure how to link these two pages together. I think it's easier to post photos on Facebook and I'm about to put up a big photo montage.

Is there a Geneticist in the house?

Javy had his annual appointment today with the geneticist. I have to say that this guy was pretty awesome. He's been seeing a geneticist since he was about 3 years old. His first one was from UAB and they are supposedly highly rated. Since we've lived in Hawaii, he's been seeing geneticists from the Hawaii Community Genetics and this time they came to Kauai. The thing I liked about this guy was that he was very open, he spoke freely. He gave us hope. He's young, though, hopefully he won't become jaded and closed mouthed, like some. I felt like I could ask this guy about anything and I did.

Anyways, they're gonna do some tests for GA1 and Fragile X syndrome. Also, he's the first doctor that ever suggested that we do some tests on his major organs, just to make sure that they function normally and see if there's anymore clues about syndromes to test for. This is one of the hardest parts about Javy being undiagnosed, not knowing what kind of hidden health problems he could have. I mean, he can't tell us when things aren't feeling right in his body. He has to be really hurting to cry.

But he also confirmed the possibility that maybe Javy was having seizures from birth and it just caused brain damage that are causing his developmental delays. (This is something that I've actually asked doctors about before) and that he does have characteristics of a child with pervasive development disorders (this is what autism falls under). This could be why he lacks certain social skills and communication. He recommended a developmental pediatrician who could help us work out a plan to help him get these skills back.

The fact is that this doctor just told his opinion and we talked to him for almost an hour and a half. I'm not sure why some doctors have to act like everything that they are thinking is top secret. I guess they are just afraid of being sued. I don't care about all that, I just want to know what is wrong with my son.