Wednesday, November 21, 2012
I have never been a huge fan of Elmo, as I have always resented him for taking the place of Kermit the Frog, of whom I have very fond memories. And with the advent of Elmo, Sesame Street changed it's format significantly. It became more targeted, more focused, almost laser-like in it's educational mandate, but leaving some of the fun muppet skits that I enjoyed when I was very young. But, I figured, it was up to them and how kids would learn best.
When I had kids, I was hesitant to have them watch Sesame Street, because it was so different then I remembered. But watching it with them, I understood what they were learning. I saw what Kevin had done with Elmo, and why he was so popular. I saw the educational vision of Sesame Workshop, and was very impressed.
Over the years, we have gotten several toys with Elmo's voice, many of which have been relegated to storage or to thrift stores because our kids have grown out of them. But they haven't grown out of Sesame Street, which has been a huge contributor to their education. And now, it is less.
Not less in the sense that Sesame Street will suffer from Kevin's departure monetarily, or even in their vision. Sesame Street lost it's creator in the 80's, and managed to continue to grow into a powerful educational provider to the world. Sesame Street is also not less in it's vision, as they will continue with purpose to educate our children. No, it will be less because Elmo, who has become a whole generation's symbol of education, acceptance, and curiosity, will be either phased out or replaced by another puppeteer. Kevin is no longer there, no longer Elmo, and for that, it will be less.
I wish Kevin all the best as he works through his private life, and I hope it will remain just that, private. I hope that Sesame Street will give him a proper send-off, perhaps by helping children understand what happens when a friend moves away (like Elmo). It will make it less traumatic for the kids, and perhaps help everyone cope with the loss of the little red monster who was friends with everyone.
Kevin, you will be missed. Thank you for your work, for your efforts, and your positive influence on the lives of my children. I wish you all the best.
Tuesday, November 20, 2012
Recently an article published in the Examiner brought up the old "vaccines may cause autism" argument by questioning the authenticity of the Danish autism and vaccine study. The article alleges fraud on the part of the Danish research group by not disclosing the decrease in Danish instances of autism after usage of mercury in vaccines stopped.
The argument that vaccines and autism correlate has been hashed out again and again, often to the point of absurdity, with proponents of both sides being dead set that they are right and the rest of the world is conspiring against them. Personally, (bias revealed), I am inclined to believe that vaccines have little if anything to do with autism rates due to the increased evidence linked to Biology and genetics. Still, I ran through a lot of research to get my facts right, and realized there are several published studies trying to link autism to vaccines and mercury poisoning, or trying to disprove the study.
So which is right? How can you know which study to believe, and which to approach with healthy doses of salt? Well, as I'm not an MD, biologist, neurochemist, or biochemist, I have to rely on others to review the materials and report their findings.
One way to do that is to check the citations. Often a study will be cited for two reasons: either it was so good that everyone wants to show it as a foundation to their research, or it was so bad that it is used as an example of a disagreeing study that conflicts with your findings because of it's poor execution. That means that based on citation alone, you can't trust a published research study. Nope, you need to rely on critical research reviews.
Critical reviews takes a sampling of research data and reviews their findings. They review based on several criteria, such as how well the study can be reproduced, the rigor of the data accumulation, the margin of error in the statistical number crunching, etc. While not publishing new content themselves, these reviews serve as a critical baseline for existing research to determine what is good science, and what needs more work.
Based on this understanding of a critical review, I dug one up on autism, thimerosal, vaccines, and causation for review. The results found that those studies that supported a link between thimerosal and autism were poorly executed and difficult to reproduce, while those that found little to no link between vaccines containing thimerosal and an increase in autism.
Now, granted, this is not a perfect way to determine a cause for autism, hence the reason why no single cause has been found. But it is a great way to see a trend in the research, determine which research is more promising in it's results, and which research is employing accurate, scientific methods to reach their conclusions. That being said, new research is being done every day, and it can only help us better understand such a complex and baffling condition as autism.
But, ultimately, discovering a "cause" doesn't help children on the spectrum much in the short term. Sure, it's nice to know, but those individuals that have it will still need the resources available to help them learn and grow, to become better contributors to society. So, while it's nice to know a cause, I think it's better to know how to help those in need now.
Monday, November 19, 2012
Now think of your average novel. Good novels, the ones that get published and have a great following, leading to movie deals and thousands of die-hard fans that name their children after characters in your books, take years to develop, write, and refine. Some may only take a year or so, some decades. It's all about turning the phrase, gripping the reader, and drawing them in. And, unless you are some kind of literary genius, it cannot be done well in a month.
So why bother? Because a good first draft requires a complete story from beginning to end (at least in my case), so that you can look at it in it's entirety, and make the necessary changes to fix it. That, and sometimes it's just fun to see if you can write a story in the given amount of time and have it worth reading. To date, I haven't done such a thing. Even after spending months of prep work building a scaffold of back story (a la Rowling or Tolkien), outlining the story, and getting to know my characters.
This time I thought I would approach the story as a way to explore a wish or a dream, and place that wish or dream in the belly of a huge problem. In this case, I have always wanted to live on a boat (or have a boat that could be lived on for long, cruising voyages). The problem is, the world just ended, and now all I have is my boat. What to do?
Anyway, the fun is working through various plot points and possibilities while writing the story. It takes a lot of focus, and a lot of research to make sure it's accurate. The nice thing is once it's down on "paper", it's easily edited, searched for, and recalled when needed.
So, now that I have decided to write the novel, what tools have I been using? Well, I've been burned before by losing files, trying to move them back and forth from multiple computers, and now I have an iPhone or iPad I can use as well, how do I write on those tools when I'm not in front of my computer? Here is a list of tools I use:
- iCloud: First and foremost I use iCloud. I don't want to come up to my iPad and see that my son has deleted the whole thing, or accidentally wash my jump drive. I also want to have offline access to the file, and have it update once I'm back online. iCloud is a great tool for that, and it's supported by my favorite editor.
- Dropbox: I spent a week writing, backing up to Dropbox, and then the unthinkable happened: my phone editor removed 7,000 words from my story, as it updated from what it had before it pulled from the cloud. Fortunately, Dropbox has a restore feature online, so I was able to get it back. From then on I kept two copies of my story: One on iCloud, and one on Dropbox. Two cloud based backups helps me sleep better at night.
- iA Writer: My editor I use is iA Writer. It's one of those "Just get out of my face and let me write" apps. I purchased it for my Mac and for my iOS devices, and I have just loved it. It supports both iCloud and Dropbox on both platforms, so I have access to both copies, just in case.
- Bing: I have been slowly and deliberately moving away from Google based items. Not because I hold any animosity toward Google, but rather because I'm concerned how much control I have allowed them in my tech life. That control has been strained, as Google kills web apps that I have used for years. As such, I started using Bing as my search engine (though I still use Google Scholar). For basic information about Avalon on Santa Catalina Island to research in pneumatic robots and atomic sterling engines, Bing has been a champ.
Friday, November 02, 2012
One of the interesting behaviors that both my sons tend to exhibit that is unique to most children with autism is their relative willingness to socialize. My oldest child had a friend at his last school, and likes to play with other kids he knows. He loved playing with his cousins, as did my youngest son. Yet this is unique to children on the spectrum, as most find it difficult to socialize, even with their parents.
I hadn't thought much about it, because in our home we get down on the floor and play quite a bit with our kids. I remember when my oldest was a lot younger (shortly after he was diagnosed), he would often lose interest when we played. Now he can't wait, often tackling me when I sit down, just to right on my back. The difference is that I would play a lot with him, trying to get him to give me eye contact. I would sit and tickle him, praise him for giving eye contact, and tickle him again. We went the rounds quite a bit, and he still loves to be tickled.
Apparently, according to a study published in the Journal of the American Academy of Child & Adolescent Psychiatry, Children who received the Early Start Denver Model therapy saw a significant change in their brain functions relating to normal social behavior, normalizing those functions to coincide with the control group. The study was well done, and fascinating to read.
Of course, this begs the question: what is the Early Start Denver Model, and what does it have to do with playing with your kids? Well, the Denver Model is a version of Applied Behavioral Analysis (ABA) therapy that takes the therapy to the floor with the child. Parents can quickly learn to use this method to help their children, and it all comes from integrating play with the therapy. I'm sure there is a lot more that goes along with it, but the core is teaching while playing. Early Start Denver Model is specifically designed for those children between the ages of 12 and 48 months to help them while their brain is developing.
So it seems that while I was playing with my son, I was implementing, at least in a rudimentary form, the Denver Model to help his development. From that period he gained some pretty impressive skills for his age at the time, and they have helped him as he goes through school now.
How did I get the idea for playing with the kids all the time in order to reinforce behavior? Well, my parents did the same thing while we were younger. I knew what to focus on because the psychologist that evaluated our oldest had told us, "work on his eye contact". So that's what we did, and apparently it worked.
Wednesday, October 24, 2012
Several parents have talked about their experiences taking their child with autism to Disneyland. Some parents have shared their experiences and advice which I have always found helpful. In fact, I've posted about this previously myself. But I really wanted to share my recent experience.
Last weekend we went to Disneyland and California Adventures with extended family. On the last day for the extended family, we went to Cars Land. While their kids were in (a very long) line to have their pictures taken with Lightning McQueen, we went around the corner from the Cozy Cone to have our son's picture taken with Red, the fire engine.
While in line, witnessed something amazing that sort of outlines why we go to Disneyland every year. A young lady with special needs, all dressed up, went right up to red and gave him a hug (at least as best as she could). The character assistant had a huge smile, the cameraman was snapping pictures like crazy. I started to tear up. She took a good 5 minutes or so to interact with Red, and Red responded back (I'm still not sure how they do that, I think their might be someone inside the vehicles). It was awesome.
Disney, with their theme parks, cast members, hotels, vacations, etc. seem to have this policy that every experience with Disney needs to be magical for everyone. It doesn't matter who you are or what your abilities are, they treat everyone as special guests. And it's infectious, as many guests try to keep that same tenor that makes Disneyland the happiest place on Earth.
My own experience comes from hearing my sons' excited squeals as we go from place to place. They both dance for joy, run to the characters they love so well from countless shorts, and give each one a hug. And the characters even play with them! It's heartwarming to know there is always one place they can just be themselves, and enjoy such a crowded, public place.
Tuesday, October 23, 2012
The morning after we moved into our town home in San Diego, we started unpacking. The kids were playing both upstairs and down stairs, exploring the new home. After a few minutes, I looked up and asked my wife where our youngest was. We started looking in all the rooms, but he was no where to be seen.
Now frantic, I ran outside in my bare feet and checked the fire exit, and it was open. Our youngest had squeezed through the small opening at the fire escape, and climbed down the stairs. I ran up and down the back side of the complex, but couldn't find him. Then a police officer drove up and asked if I was looking for a child. They had found him down the street, walking in the middle of the road (thank goodness it was early on a Sunday morning!).
While both our boys have bolted before, this was the first time our youngest had bolted without our knowing. It was particularly frightening because we didn't know anyone in the area, our son didn't know the area, and it happened when we were certain that the town home was secured. We have since fixed the issue, but it remains a fear.
USA Today reported a study conducted by the Interactive Autism Network Project and published in the journal Pediatrics that finds 46% of children with autism have wandered, bolted, or eloped, and 49% had done it at least once after age 4 when bolting is no longer supposed to be that common.
Wandering is a very dangerous problem that threatens those on the autism spectrum because they often have close calls with traffic or come in danger of drowning. It's frightening for parents, frightening for the children, and you get some very interesting questions from the police when you don't carry your ID in your pajama pocket.
Ways to resolve bolting include double lock deadbolts, so a key is required to enter and leave the house. This works great, until your child figures out the right key, where it is, and how to get it. Alarms are also very common, both on the doors and on your children. The doors are more common, though if you have people coming in and out regularly, it defeats the purpose. Proximity alarms on your child work well, assuming they are willing to keep their transmitter on their person (my son is quick to find those things and take them off).
There are a things you can do as a parent, but it really helps to have the community behind you. I was very grateful for three officers in San Diego that Sunday morning that helped me locate my son and bring him home. Once I told them he had Autism, they then understood why he was so feisty (their word), and why he was unable to tell them who he was and where we were. And it served as a very dramatic reminder to us how important it is to make sure all avenues have been properly accounted.
Sunday, October 07, 2012
It is now two weeks since we have moved the entire family to San Diego, and I thought I would report on the progress so far.
First, the town home in which we have moved is now put together, and feels like a home. Pictures are up, boxes have been sent to recycling, and furniture has been placed. The boys are very familiar with every inch of our town home, and have settled in nicely.
Because of space restrictions, the boys have a bunk bed, with our youngest sleeping on the top bunk. Both boys like their bed, and have spent quite a bit of time playing in their room (though not as much as I would like). Their room is small, but big enough for their needs, as it also means we needed to trim back on the toys they had.
Crookshanks, our cat, hasn't been so relaxed in years. She loves every bit of the town home, including the neighbor's parakeets across the courtyard. She has a couple favorite spots to sit, the most common being on the landing between the two flights to the top floor.
The boys are loving school. Jonathan will come home from school (he gets out at 2:00), and after being home for a while will grab his backpack and wants to head out again. He doesn't want to stay home when he has his school so close. Luckily, if it gets urgent, the public library is just around the corner.
Scotty loves his preschool class. In fact, he loves it so much he doesn't fuss when Kristal drops him off anymore. He did for a little bit at first, but he has gotten better since. Both boys have to get used to getting out of school early (or not going to school for Scott) on Wednesdays instead of Fridays.
Kristal is settling in well so far without having to go to work. She put the house together within 2 weeks of moving everything in, so efficiently in fact that I was surprised she was able to get everything in. She also has a number of other projects to keep her attention, and she is finally has time to read.
Work has been exciting and new for me. Currently I'm working on video and audio recordings to produce and release online training for an Introduction to the Macintosh class. It's been an interesting exercise trying to find a quiet place to record audio in a call center, but I've managed to find one training room that is quiet enough. The work has been rewarding, challenging, and exciting.
So that's the progress so far. The beach has been fun, the weather different, and all and all it's been a great experience. I'm excited to see what comes in the future. For now, I'm just going to enjoy being with my family.
Monday, October 01, 2012
This last week I checked out the Motorola Xoom from my office. I did so to get familiar with the Android tablet environment. I took it home over the weekend, and with some time on it and the help of my kids, I think I have a better understanding of how the Xoom works. Here are my impressions, though please note that I do have a clear bias toward the iPad, having owned one since they first came out.
First, the hardware design. The Xoom is smaller than the iPad, in that it's narrower though just as long. It's also significantly thicker, feeling more substantial than the iPad. It's definitely designed to be used in landscape mode, as noted by the positioning of the volume controls. But the thing that is most puzzling to me is the location of the power button. It's on the back, instead of around the side. With it flat on the table, you can't turn it on. Cases need to have an extra wide hole on the back to make it accessible. This is an unnecessary inconvenience, in my opinion.
Powering it on isn't very intuitive either: you have to hold the power button down to get it on. To put it to sleep, you have to tap the power button. Hold it down too long, and it asks you if you want to turn it off. I actually had to look up a way to power it up when I had turned the thing off. Not a very good design, in my opinion.
The battery life is curious. It seems shorter than the iPad's, as it spent a lot of time sleeping, and after a weekend was down to 45%. Based on the estimate from when I had fully charged it, and it's use it got over the weekend, it would have about 5 days worth of life. That same usage and sleep time on the iPad would last me at least 8 days. I'm not sure if this is because of the apps running in the background, or what. Still, for a tablet, it's respectable.
Once I get it on, The Android OS works well. I'm running 4.1.1 Jellybean, and it's very responsive. The only things I don't like are more, well, bare-bones functional. The keyboard is frustrating to use, more so than the iPad. As I start typing, if I go too fast it starts throwing smiley faces in my text. So that makes it very frustrating when trying to write anything from the screen. I also don't like the separation from my Gmail account and my Exchange account for work. I really don't like having to go to two different mail apps just to manage all my mail.
That ends my gripes. Let's talk about those things that were different. It takes some getting used to the Android tablet platform if you have used the iPad. The most notable thing was the virtual home button. It's no longer a way to wake the thing up, that being relegated to the power button. But once you get used to it's location it becomes comfortable. Not good, not bad, just different. And different in and of itself is a good thing.
It's very different to have widgets on the desktop, and then have to go to another screen to get to all your apps. It's about like having a hybrid of your Dock and Dashboard, with a Launchpad for all the apps. Not good, not bad, just different. Once you get used to it, it's not that difficult to work through.
That ends my adjustments. It was actually less than I thought I would need to adjust. Other than that, working through the features were pretty simple, and finding settings were pretty easy. Though I have to say that setting up an Exchange account would not be an easy task for someone not familiar with AD Directories. Is that possible, you may ask? My answer would then be in the form of a question: have you ever worked for a hospital that uses AD? So far my experience has been that most people who have other expertise's than computers tend to equate their email password to Email only, have no idea what Active Directory is, and don't know what the domain means. So while the email process is not intuitive, it just requires a little extra hand-holding for support to get it up and running.
So now the things that I liked. Frankly, the integration with my Google account is amazing. This is, well, much like iCloud for Apple. It's seamless, allowing me to access all my materials in Google without any hassle. Perhaps the only problem is the apparent lack of a Google Docs app (at least I couldn't find one so far in the Google Play marketplace). Other than that, everything is pretty clean and easy to use. Add a Bluetooth keyboard and this would easily be a replacement for a laptop, much like the iPad. I had all the basic apps necessary to do the job.
So my overall impression? If not for the non-software driven gripes that I had, I would have put it on par with the iPad easily as far as experience and functionality. The Android OS definitely has that same feel, though I would have to say iOS is more user-friendly. Of course, Android is geared more to those who are tech-savvy, so that's not a bad thing. But I will tell you my kids run to the iPad more often than the Android device after taking the Xoom through it's paces. I can't wait to see what other tablets may have in store (like the Samsung Galaxy Tab) with a different hardware design. Android is definitely a solid OS that brings a lot to the mobile OS table, and reinforces the idea that we are in a post-PC world.
Could I switch to Android? Possibly, but I don't think I would. Is it because of any deficiency in Android? No, it's purely because I have already invested so much into the iOS platform as far as apps that the switch would be painful. Do I think I'm missing out on much by not switching? Not really. The real strength that I can see in Android in usage is it's tie to the Google Gmail account, from which I am slowly weaning myself. I try to use it less than the past because of functionality changes that Google has made to their site (the loss of iGoogle was the tipping point). That having been said, I can see why someone would feel the same devotion to Android that I do for iOS, particularly if you have invested a lot into the platform.
Tuesday, September 25, 2012
Today, I turned in the UHaul truck, ending the move in process for my family. We are now, officially, moved into San Diego. You would think it would be simple, wouldn't you? But it turned out to be long, drawn out, and anxiety-ridden.
First, there was the drive down. The drive from Salt Lake City, Utah to San Diego, California, is supposed to take 10 hours and 38 minutes (according to Bing maps). In the past, we have made the trip in anywhere from 11 to 14 hours with the kids and our one car. This time we would be traveling down with the UHaul 14-foot truck stuffed to the gills (thanks to the expert packing skills of my brother in law), our car and my father in law's truck. Traveling down would be my wife, kids, sister in law, and cat in our car. My brother in law and I traveled in the UHaul, and my in laws drove their truck.
Let me preface this trip by noting how the UHaul truck is not built for speed or fuel efficiency. That being said, we spent 13 hours on the road (much better time than I thought) with a couple of stops for lunch and breaks. For a while I drove with my eldest son in the truck with me (there was a child seat in between the two seats), but mostly it was just my brother in law and me. We had some great talks, discussing quite a lot, but mostly talking about what would be required for him and his family to move down to San Diego as well (closer to the Chargers, his favorite team).
Some events that were noteworthy in the trip:
- Hills coming out of the Desert were a beast. We could only max out at 45 mph, and our miles per gallon suffered tremendously.
- Jonathan discovered the easiest way to get his uncle nervous is to unbuckle his seat belt and turn on, then off, the map light.
- The agricultural stop along I-15 was a bear. I apparently got the lane with the only officer determined to do the job right. I had to stop and open up the back to satisfy the requirement of not hauling fruits or vegetables (or other live plants) in the back. I understand why he did it, and I understand how important it is, I only feel sorry for those stuck behind me as I opened up and then closed the back.
Once we got to the town home, we started to unload as we waited for my wife to show up with the key (she took mine in anticipation of getting to the town home first). Once we got in, I then realized just how much my wife packed. Keep in mind that we had already thrown or given away almost half of the stuff we had in the house. We took very little, or so I thought. Once we started to unload, I realized there was still a lot of stuff. Luckily our town home we rented has a lot of storage in it's little space. But what I thought would take a total of 2 hours started looking like four, and I was tiring quickly.
My mother in law called my wife's uncle, and asked him to come down and help us unload. I didn't ask anyone for help in the new city because I didn't know when I was coming in and didn't want to have them wait around for nothing while we were still on the road. But my wife's uncle, who had already moved someone that day, came with his wife and they helped us move a lot. I'm very thankful for their help, because it gave us plenty of breathing room for the rest of the weekend.
So Saturday ended with everyone in the house, about 3/4 of our stuff from the truck in the house, and all of us very, very tired. On Sunday we started to sort through what was in the house. During this time our youngest found the sliding glass door on the top floor, and followed it out onto the fire escape, went down the stairs, and started to explore the street. He was picked up by the police who couldn't get his name (of course, he has autism), and once they found a very frantic father searching we were reunited. I now have the sliding glass door blocked so little adventures like that shouldn't happen again (knock on wood).
The rest of the day Sunday was dedicated to organizing the house. We were getting help Monday to move the rest of our stuff in, so we needed to make spaces for it. We hung up the TV to keep the kids happy and my wife went crazy putting stuff away from boxes, while I took them to the recycling bin or dumpster. We picked up some critical food items for the day and next morning, a few critical items for the house, and made a significant hole in the boxes.
Monday we started by getting my son off to school. It was a good experience, at least as well as could be expected as they didn't get his Individual Education Plan (IEP) before we got there. They now have it, and he really enjoyed school. So much, in fact, that he kept putting his backpack on to go back to school after he got home. That's a great sign, and I'm excited to work with the school. It's a small school, very close (takes 15 minutes to reach while walking), and both our kids will be going to this school.
Once we got him off to school and felt comfortable that he was set, we did some critical purchases of a new mattress for the boys' bunk bed, some new tools that I have needed, and our food shopping. We then got back to work clearing out space for our additional stuff.
That evening we had some help come from our church, one couple and the Elder's quorum president. It was a great experience meeting and working with members in the ward, knowing they were willing to take time out of their schedule to come and help us move. With their help, what looked like a three hour job was done within an hour and a half. As a thank-you, they got some well aged hot carrots and some water.
This morning I needed to get to work, but fortunately for us the UHaul drop-off location was just down the street from my office. So this morning I took an early lunch and dropped it off with 6 hours to spare. That finished the move for me, ending the anxiety of someone taking off with the truck as it was parked overnight at a location that was 15 minutes away from our home (in front of our church house). But it all ended with no mishaps or damage to the truck.
It will be at least the rest of the week before we are completely done moving in. We still need to put up some cabinets for our dishes, put clothes away, and get a china cabinet to display the collectibles and nick-knacks that make a house a home. Perhaps this weekend we will be able to do the things that I have enjoyed so far with San Diego, like visit the beach with the boys, or go to Sea World (we already have passes). At any rate, it's been an eventful trip, but I'm glad it's over.
Wednesday, September 19, 2012
Article first published as Promising Research in Autism: But Far From Cure on Technorati.
The journal Science has an article entitled Shared Synaptic Pathophysiology in Syndromic and Nonsyndromic Rodent Models of Autism, which found a common bond between Fragile X and autism. And what's more, they were able to "reverse" the autism-like symptoms, in mice. The article that drew my attention to this research was Neuronal Dysfunction Found In Autism can be Reversed, posted online at the Examiner. Imagine my surprise, and excitement, when I read that an effective cure for autism had been found!
Of course, I checked my excitement and started to read the article. It seems that scientists have managed to duplicate the genetic effect that causes autism-like behaviors in mice with Fragile X Syndrome in mice with "autism". Basically, they introduced an antibiotic (an environmental stimulus), which caused the neuroligin-3 gene to turn off. This gene is instrumental in developing glutamate receptors and neural pathways. Without this gene, the brain just connects willy-nilly, and as a result causes autism-like symptoms.
The research is ground-breaking, because they found a way to turn the gene off, and subsequently back on. That means, should this gene be defective in persons with autism, it's possible in the future to treat their autism with drugs. It could be possible, perhaps in the not too distant future, to have children with autism retain their minds but be able to engage socially.
So why curb my excitement, if this is such a great breakthrough? There are a few things that are assumed by the news article (though not by the scientists):
- Autism is caused by the neuroligin-3 gene: This is quite an assumption, since there are now over 200 genes found to be linked in some way to some form of autism. Still, as it is confirmed in those with Fragile X Syndrome, this is excellent news.
- Non-environmental disruption of neuroligin-3 can be reversed: This will most likely be the next phase of the research. Biologists and neurologists will need to check to see if, when this gene is already turned off naturally, it can be turned back on using environmental drugs.
- There is a biological consistency between humans and mice: As with most biological experimentation, this research was done on mice. The question now is, can it be reproduced in more complex mammals, such as humans? There is a lot of difference between a mouse and a little boy.
Of course, I'm not discouraged at all. I think any research that produces results such as these are fabulous. Clinical vetting still needs to be done, lots of research to test the theory, and of course there needs to be some test subjects and clinical trials, but all in all I think this is great news. Perhaps one day we will be able to have a way to treat autism's worst symptoms while unlocking the brilliant minds that are just waiting for us.
Tuesday, September 18, 2012
Not too long ago, when Stem Cell research became the new medical miracle buzz-word and received the support of a prominent Senator, I saw an opportunity that had hitherto been unavailable: growing transplant organs. The news was all the rage with the idea, but it hit very close to home: you see my wife donated her kidney to her younger brother. She was a very close match and made the transplant go really smoothly for him. But even so, the urologist still said he would most likely only have the kidney for 20 years before it was rejected. After reading about stem cells, I couldn't help but get excited.
But as the years went by, the only news I read covered the controversy over embryonic stem cells and not the advancements that were being made in stem cell research. I feared that the future of human organ replacements using stem cells to grow organs would remain a very distant dream.
Then I read this article about tailor-made organs in the New York Times, and I was thrilled! Here was a research specialist that was developing new simple organs (in this case a windpipe) using stem cells from bone marrow. The results have been promising, and future research is moving toward more complex organ growth.
For anyone who has a family member that has received, or needs, a transplant, this news is nothing more than amazing. It could be possible in the near future that everyone who needs a transplant could have one within a few months, and will not need to take any rejection-inhibiting medication. No longer will recipients be denied a kidney, heart, or liver. Instead, they will have one "grown" from their own cells. And that will be a modern medical miracle that will help me rest easy at night.
Monday, September 10, 2012
Kotaku has an article about Valve bringing Steam to the TV that is due to be released in Beta today. The argument is that Consoles are great, but they are walled gardens and Valve wants to create an environment that can be used on any box, at any time.
The timing is interesting, and the more that I read about Valve's Steam TV, the more I realized this could be Apple's way into console gaming without having to court high end developers to try and develop for the Apple TV platform. Not that I think there would be a big fight to get into the Apple TV market, even though it is very small. But Steam already has a huge inventory of games that would work given the right interface.
I've long believed that Apple would find some way to get gaming to the TV through the Apple TV. The most commonly believed avenue would be bringing your iOS apps to the TV, with the controller being the iPad or iPhone. It seems reasonable, and very likely. It wouldn't be at the same level as most of your console games, but then it wouldn't need to be since the expectation would be that of your iPhone gamer. But console gamers would want more.
So now, enter in Valve's Steam TV. Here you have very common PC games that already run on the Mac (thanks to the Mac release of Steam). Making an iOS compatible version of Steam shouldn't be that different from the Mac (depending on the software development platform they used), and it could be released to a broader audience than just the Apple TV in the very near future (iPad Steam, perhaps?).
Another argument for the release of Steam TV Beta on the Apple TV would be the current saturation of the Apple TV: a few million boxes are out there, but it's not as widespread as many other devices. Add a restriction to perhaps the latest Apple TV with the A5 processor and 1080P resolution, and you have even less. It's a perfect testbed for Steam TV.
Of course this is all supposition, as I don't have any contacts with Apple (who wouldn't say anything anyway, even if I did), and I don't have any contacts with Valve. But the idea is so interesting, so exciting, and so possible, I think it could happen. Perhaps this could be the "one more thing" for the announcement on Wednesday. What do you think?
Sunday, September 09, 2012
Article first published as "Junk" DNA: Could This Be the Unified Theory for Autism? on Technorati.
The New York Times has a great article on research done on "Junk" DNA, or DNA sequences that are not genes. The article talks about the part of DNA that are not instructions for building proteins was was previously considered unnecessary appears to be active (at least 80% of it), and needed. This part of the genetic code acts as switches that determine how genes are interpreted, which are used, and ultimately can determine which cell becomes, say, "a liver cell or a neuron".
What's really interesting about these switches is how they are activated. It seems that environmental factors can change which switch is active, which is used, and how the body can be (or not be) prepared for illness. There have been at least 6 articles published in the journal Nature about these switches, and they have already have found links between them and diseases like multiple sclerosis, lupus, rheumatoid arthritis, Crohn's disease, and celiac disease (see links in the NYT article), and can even dictate a person's height.
After reading this article, I couldn't help but wonder: how do these switches relate to autism? The debate into causes of autism have been raging (and I'm one of the ragers, I know), and has divided a lot of research funding amongst many different theories. Right or wrong, it has been frustrating for parents, advocates, and politicians as everyone starts taking sides.
But when I hear that environmental changes can affect how switches are turned on and off, and I think about how much genetic evidence seems to be there for autism (in that certain genes need to be dominant, certain mutations need to happen, etc.), and tie that all into the various diseases already associated with these switches, I can't help but wonder if there is a direct correlation between many of the claims of autism causes and our "junk" DNA.
Now, please note, this is purely my speculation, but what if these switches are responsible for autism, or at least responsible for when those mutated genes that are associated with autism are activated? It would explain any environmental relationship with autism, it would also explain any autoimmune conditions that cause autism, and a lot of the other conditions that seem to be related to autism. And once we know the cause, we know where to look for treatment.
Now, again, this is purely speculation on my part, and there is no research to back this up. Please take it with a grain of salt until someone does research in this area. But it's exciting to me to think we are at the cusp of something so significant that could mean so much to us. Perhaps it is the answer, perhaps not. Still, I can't help but hope for the breakthrough that brings us all together under the same umbrella. Because once that happens, our internal squabbles can be put behind us and we can spend more resources on what's important: our children.
Saturday, September 08, 2012
Unless you don't follow the Apple brand very closely, or don't own a smartphone, you are probably aware that Apple is having their iPhone announcement event on Wednesday, the 12th. As with a lot of other pundits for Apple (and against), there is a lot of supposition going into this announcement. Let me outline what I would consider newsworthy:
- LTE: This should go without saying, as it's expected and has been for a long time. Apple will finally release an LTE phone. They have an LTE iPad, so the stretch shouldn't be that big a deal. I think it's safe to say that Apple will have LTE in their next gen iPhone. If they don't, then it will be a huge disappointment.
- Better VIdeo Recording Tech: The 4S had some incredible recording tech with their steady hand recording. I'm looking for much better recording in the new iPhone, and possibly a better camera.
- iPod Touch Refresh: The iPhone dominates the news, but I'm looking for a refresh on the iPod Touch. It's been a huge hit for a long time, but there hasn't been a lot of changes in the past couple of years. Perhaps this year the iPod Touch will get it's big remake... as the iPad Mini?
- Apple TV Grows Up: Wired had an article recently about the 8 apps that the Apple TV needs to win the set top box war. And I agree whole-heartedly on these. Sure, you have Netflix and now Hulu Plus, but given Amazon Instant Video, specific apps for all the big (and small) networks, and add iTunes U (and similar) to the mix, you have one killer device that doesn't have to be connected to your cable provider. I've mentioned before how I think the cable companies could get into the mix. But if they don't, what better way to get around them than work with the independent networks? I like the idea, at least.
- Apple TV Gaming: This is another thing that I've wanted to see for a long time. While I don't expect the Apple TV to take the place of your big workhorse consoles, I think light gaming as seen in the iOS store would be very doable on the Apple TV. It could be very social, using the Apple TV as a central screen for individuals on their iOS devices going head to head. That would be sweet!
So that, at least, is my list of things I would like to see. What am I not expecting to see?
- RFC Payments: Google has been championing RFC technology for a while now with Google Wallet, and trying to get more and more vendors to by into it. Personally, I don't trust it because it's so easy to capture and duplicate RFC signatures, making it less secure. I'm sure Google has ways around protecting your money, but it's still a concern. Apple has already got some great deals going with Square and other payment methods without using RFC, so I don't see them going to it in the near future. Still, I could be wrong, as this is all just supposition. ^_^
- Reasonable Data Rates: Not really a problem that Apple can solve, as this is completely up to the carrier, but I don't see reasonable data rates coming from the new iPhone, and I don't know how it would get fixed.. unless there was only one national carrier that had all the LTE spectrum currently available.. but we all know what happens when you have a monopoly.
- No Snide Comments from Haters: Maybe it's the presidential election, the years of whining from pundits on both sides of the Smartphone environment, or perhaps just hanging around people who are so sure of their opinions without any proof given, but I'm sick to death of haters attacking other haters. Heaven forbid I prefer an iPhone to a Galaxy, and vice versa! *sigh*
- Waterproofing: Not that this has happened in my family, but some people do accidentally expose their iPhones (and other electronics) to water. There are lots of solutions to this problem, but apparently there is one that is a treatment to the internal surfaces of the components that can make the phone "waterproof". To what degree remains to be seen, but it would be nice to be able to take my iPhone to Sea World without worrying about where to sit, stand, or kneel. I'm sure it would make the iPhone the most valuable phone/camera at that point, and would be a feature very few other phones have.
- Built-in Projector: Forget having to cart around either an Apple TV or special adapters and cables.. why not just project straight from your iPhone or iPad? If this even was available it would most likely end up on the iPad, and would probably be so impractical to the majority of purchasers that it wouldn't make sense.. still, it would be awesome to just pull out your phone and run a full HD-quality presentation without anything else.
- Hand-held Scanner: Also not very practical, particularly since you can just take a photo of the object, but a high quality scan would be awesome. Not sure how it would be applied though...
- Laser Keyboard: It would be so awesome if, some how, a laser keyboard could be built into the iPhone, negating the need for an on-screen keyboard or a Bluetooth keyboard. Practical? I think so. Difficult? Definitely. Cost effective? It would mean fewer keyboard sales..
- Teleportation: Perhaps I've watched Phineas and Ferb with the boys, but a teleportation app that could automatically take you anywhere in the world? Awesome! Vacations would be a breeze, and I'm certain we would be off foreign oil very quickly. Of course, there's the whole quantum physics, computer processing necessary to make such a thing possible, and the facilities necessary to make it happen just don't exist. But if it did, awesome!
So that's my list of what I don't think will happen. Perhaps I'm wrong, perhaps not. We will see. But what about my list of unlikely features that I would really want?
Anyway, that's my list. What are you looking forward to come September 12th? What don't you see coming? What would you like to see?
Thursday, August 30, 2012
Article first published as Selling an Idea: Autoimmunity and Autism is the New Snake Oil on Technorati.
On Saturday, the New York Times ran an article in their Opinion column with the following title: An Immune Disorder at the Root of Autism. The article made a very clear, glaring assumption: All children with autism are subject to a self-destructive immune system, which is caused by a lack of parasites in the body. By the end of the article, the author (not a doctor, by the way), claims that by introducing whipworm into the system in order to treat autism in children. Never mind the dangers of such a decision, the illness it could cause, it's all because we don't balance our immune system by being too clean.
With such a wild assumption, particularly with the recent finds in Iceland regarding genetic mutation likely in aging fathers, it needed to be checked. According to the author, research has been done to prove this theory. From what I could read from doing a quick Google Scholar search, all studies revolving around the connection between autism and immune systems were inconclusive, requiring a lot more research. Most of the research out there is sparse, and much hasn't been duplicatable in additional studies, casting doubt on the connection.
The problem is, the author, who is flogging his book, "An Epidemic of Absence: A New Way of Understanding Allergies and Autoimmune Diseases", which will be available September 4th, makes claims without any substance or citations. Biologist Emily Willingham took him to task in an article that is well worth the read. She did a lot of the legwork in searching for research, sifting through the author's claims, and pointing out the glaring problems in his article.
The problem is, people are going to believe him. The same people who are determined to believe that vaccines are the root cause of autism are taking this up as "proof" that their theory is correct. Others will start giving parasitic eggs to their children, infecting them on purpose, in an effort to "cure" their autism. Children are going to get sick, if not die, from malnutrition and anemia because parents are going to panic.
I've long maintained that autism is a condition ripe for misinformation, as no one knows what causes it. As such, much like the uneducated peasants of old, snake oil salesmen can come in with their crazy ideas, sell a book or treatment, make millions, endanger children in no position to defend themselves or tell their parents they hurt, and have a following vow that they are right and anyone who doubts is a "hater". It's scary, it's frustrating, and it's wrong. The only thing that can combat such charlatans is good education, of which there are plenty, and yet many people refuse to be educated, refuse to do the research, and therefore give up their responsibility as parents to someone else.
Now, I'm all for new theories, and new research. But to make an explicit claim that ALL instances of autism are caused by anything has to be backed up by a significant amount of research before I'll take it seriously. New research is just that, new, and assumptions are made based on the results of the study and the biases of the researchers. Additional studies need to be made with the same results being found, in order to reinforce the theory or find an actual connection. Until that has been done properly, Mr. Moises Velasquez-Manoff has cast himself as a snake-oil salesman looking to generate sales of his book, and not to help children and adults on the autism spectrum.
Sir, shame on you.
Friday, August 17, 2012
Article first published as Is Autism a Death Sentence? on Technorati.
I don't envy doctors. They take a lot of grief from patients who are not happy about aches and pains, get drilled on all the latest advertised drugs that anyone with a television seems to think they need, and once in a while they are placed in an untenable position: They have to decide who gets to live, and who doesn't.
Recently, it was reported by ABC News and other news outlets that Paul Corby was denied the waiting-list for a heart transplant, because he has autism. He has autism, which is defined medically as a psychiatric condition, and because of the potential issues with drugs necessary, at the age of 23 he was denied the chance to wait for a heart. Why did he need one? Because his left ventricle didn't close when he was born, and his heart doesn't pump enough blood. It's a dangerous, life-threatening condition that would require a transplant. And yet, he can't have one.
I don't know of any other reasons why he was denied, what factors were weighed, or whether or not it was an attack on his autism as opposed to legitimate reasons, so I can't comment on the decision itself. But It does beg the question: should autism restrict anyone medically? Should someone with autism be excluded from blood transfusions, organ transplants, or revolutionary new procedures? We all know that organs are rare, and there are long waiting lists for organ transplants. Should someone without autism be considered in front of someone with autism?
It's so easy to see someone with autism or another physical disorder and see only that disorder. You don't see that children with autism can also be children with the flu, children with chicken pox, children with measles (yes, if you don't get them vaccinated), and children with a cold. Our kids get sick, and often without us knowing right away because they can't explain how they feel. It is frustrating for parents enough when you know they will be out of school for a couple days. I can only imagine what Paul's poor mother is feeling, knowing her son's life isn't worth the same as others on the waiting list, just because her son has autism.
The media has been reporting on this story for days, and I'm sure they will talk to every expert out there, get plenty of public opinions on the matter, and even find some celebrity to make a comment on the situation, on the outside. My heart goes out to the doctor that made the decision: that unpopular, inflammatory decision that could be very damaging to a career, should anyone find out the doctor's name. It's a responsibility that I would never be able to manage, personally. I'm really glad that I'm not a doctor.
Monday, August 13, 2012
Article first published as Bearing Up the Yoke of Autism on Technorati.
I just read a very telling post by a very human mother of a child with autism. She described a situation where immediate changes of plans was necessary, but yet they had to deal with the elephant in the room: her child's autism. She describes her momentary frustration she has with her child's condition, and the limitation it places on her to be able to do what she feels needs to be done (for more information on the situation, please read her post).
Her description of autism as a yoke, something that holds her, her family, and her child back, is a very telling metaphor. Families who have children on the autism spectrum find that all their plans for their family, the visits to crowded locations like airports, amusement parks, museums, concerts, etc., are all limited by the sensory needs of their child.
With our family, we had frustration after frustration as we fought to find a way to keep our sons occupied during the summer months without having them go outside in 100+ degree weather. We found more time was needed to devote to our children's education in order to help him move to the level of his peers, only to have his slow speech disappear during the summer. Often times dealing with autism, and not the child, seems to become an exercise in futility.
Now, I don't want to sound like I'm complaining about my sons. I'm not. I love them both deeply, and love the lessons they have taught me in patience and unconditional love. They are both my children, and have such wonderful personalities that I can't imagine having any other children. They are generally very happy, constantly enjoying even the most simple activities. They are both so willing to help. It's just that barrier of communication that autism brings to our relationship that makes it frustrating.
All parents are human, even parents who have children with autism. We work hard to make sure that autism doesn't interfere with everyone else's lives, at the expense of what is perceived as "normalcy" for our own. And at times, we can feel at a loss to see the positive side of such attention. But then your child looks you in the eyes, smiles big, and says a word (or even two!), and your world comes up roses.
So, just like the oxen who work together to plow a field full of live-giving grain, parents of a child with autism can accomplish great things by pulling. But don't look down on any of us if, at times, we chafe just a little bit.
Monday, July 30, 2012
It’s been a week in San Diego, and I’m really liking my new job. I took a job with the University of California, San Diego’s Medical Center as the lead trainer for the Information Systems’ Customer Service department. To date I’ve learned where all the training rooms are, who I’m working with, and what the Information Systems management has in store for me.
The campus is huge, or rather very spread out. The University of Utah has campuses all over the Salt Lake Valley (and a couple of other locations in Utah), but nothing like UCSD. Not that it’s a bad thing, but with UCSD, travel for training is definitely required. I have one campus on in Hillcrest (between Seaworld and Old Town, roughly), and the main campus at La Jolla (which has a beautiful beach, by the way). There are a couple of other locations as well, so being mobile is necessary. Thank goodness for my motorcycle, is all I can say. ^_^
The department handles all the computer questions and issues for the UCSD Medical Center and employees. They hired me because, much like many other medical centers and doctor’s offices across the country, the University has seen more Macintosh computers creep in. As such, they found that they are required to provide support for them (especially as many are senior executives). Also, tablets are becoming more common, so things like iPads and Android devices are growing in popularity.
So now I’m looking for houses, town homes, condos or apartments that are within my budget, and then I will start looking at schools. After all, that’s why we looked into moving to San Diego in the first place: the opportunity for children with Autism.
Well, that and the beach. ^_^
Friday, July 06, 2012
Article first published as Autism's No Joke on Technorati.
Monday night, July 2nd, 2012, prominent rapper 50 Cent received a tweet from one of his 8 million + followers threatening his life if he didn't release a new album. It was a stupid tweet, and one that would have prompted an FBI investigation. But instead of taking an official method of dealing with this one follower, 50 Cent replied with the following:
"yeah just saw your picture fool you look autistic."
"I dont want no special ed kids on my time line follow some body else"
Instead of taking the high road, he shot back by using a very vulnerable portion of the population as a weapon, much as the"R" word was used during the 80's and 90's. The comments were unbelievable, and prompted quite the outcry against the rapper. The best that I have seen was from < href="http://missjia.com/2012/07/05/holly-robinsonpeete-amused-50-cents-autism-jokes/">Holly Robinson Peete, where she called on 50 Cent to remove the offending comments, at the very least.
I'm not a follower of rap music by any means. I have a very eclectic collection of music, but rap is one thing I never really got into. I don't own, or have I ever wanted to own any music by 50 Cent, and now I'm less inclined to make any such purchases in future.
Why do I feel so strongly? Because while growing up my brother, who was never diagnosed with autism (they didn't do that sort of thing in the 70's and 80's) was often the outcast. He was even used as a punishment on the bus while going to Junior High (If you were a problem child, you had to sit next to my brother). It was frustrating, and I often got into disagreements with the bus driver (and did a lot of walking home) over this very thing.
People with autism are just like everyone else. They have feelings, they care about what others think of them. They want to have friends, socialize, and be "normal". They don't need prominent celebrities alienating them in a public forum, even if it's in response to inappropriate behavior.
Some have called on 50 Cent to apologize. Others have called for a boycott. Personally, a boycott for me wouldn't mean anything, as I never have and probably never will want to purchase his music anyway. But I do think something very powerful needs to be said here. Autism isn't a joke. I don't want it to be turned into another attack by kids. I don't want to see what happened to my brother happen to anyone. Ever.
50 Cent, I'm sure you don't care about what the autism community is saying about you. I'm sure you think you are safe in your record deals, fame, and fortune. Sure, you didn't make a racial slur, or attack anyone because of their sexual preference. But you did attack my two sons. And that's just not cool. Perhaps you should have thought before you wrote anything.
Apparently, a lot of people have been video-taping themselves smashing 50 Cent CDs, which has caught the attention of CDSweep, a national fundraiser for Autism by using donated CDs and DVDs. They provide funds for the Autism Science Foundation (ASF), a 501(c)(3) public charity that provides funding directly to scientists and organizations conducting critical autism research. They would prefer that those who are outraged with 50 Cent's conduct instead donate their CDs to benefit autism and autism research. I can't think of anything more poetic then that.
Thursday, July 05, 2012
Last week I posted an article on why I was moving, but I didn't talk about the actual move. The decision to move was a tough one. We really liked the school our son was attending, and liked the path he had gone through so far. We had some great memories in our home. But we have been feeling a little cramped, and with an increasingly indifferent State Legislature when it comes to Autism coverage, it seems Utah, as much as we love it, is becoming a difficult place to live with a child with Autism. So, I started looking for other places to live. I had the following criteria I wanted fulfilled in a new place to live:
- Great place for Autism coverage
- Moderate climate (my wife doesn't like the cold, and I can't stand heat)
- Close to autism-friendly attractions
- No hurricanes (my wife's rule)
- Small homes
The small homes section I chose because I wanted to more or less force our family to wittle down our collection of "stuff" so we would have a simpler feel to our home. I managed to get rid of my jeeps (sold one, and gave the other away), culled out a lot of clothing that I didn't wear anymore, and cleaned out a lot of stuff from the garage that we just didn't use. My wife has done the same thing with her stuff, and we have done the same with the boy's stuff. We went from what would probably have been a 20 foot truck move to probably a 14 foot truck move (though we will probably go with a 17 footer, as it's the same price at uhaul.com).
Anyway, I started looking at different Countries about a year ago. Autism is well supported in the UK, Ireland, and Germany (from what I had read), and I've always wanted to live in Scotland, and so I started applying for jobs. The problem is immigration to the UK is difficult, particularly now. While I would qualify with a sponsor from a company, none that I applied for were willing to make the leap for me. It was a pitty, since there was one job in particular for which I was considered that would have been awesome. So, with Scotland out, Ireland going through a very rough economic situation, and Germany being out since my wife isn't keen on learning the language, I started looking Stateside.
So with that criteria, I looked at all the States that have great Autism coverage and programs. While there were a lot of States on the East Coast, California managed to pick up all the criteria we had, provided we chose a large city. That's problematic, because the Sunshine Tax is pretty high in San Diego, Los Angeles, and the San Francisco Bay area. But, I started to apply to several jobs and we crunched the numbers. We started paying off debts, cards, and anything else we could, cleaning up our "stuff", and did a lot of praying. It wasn't until after I had made the decision that we needed to move that I told my wife I was applying for jobs in California (she's from San Diego and has always wanted to move back there), so she had no bearing on my choice of location. Though once I told her I wanted to move, and where I wanted that move to be, she told me I could have a motorcycle if I got her back to San Diego. Good thing I came through, since I got my motorcycle two months ago. ^_^
Anyway, it was a nerve-wracking decision, because of obligations here in Utah and my teaching schedule here at the University of Utah. But it was a move that needed to happen, one that was a long time in coming, and one that took a lot of soul searching, planning, and prayer. And after applying to 45 different companies (at least), and for about 50 or so positions, I landed a job at the University of California, San Diego. This was the school that was my second choice for my PhD (the first was St. Andrews in Scotland). Perhaps I will still be able to make it to that PhD goal, when the kids are a little older.
Anyway, it was a great journey looking for a new place to live, and I'm looking forward to the move in just over two weeks to San Diego. Once I'm there, I'll post some of my experiences of Autism in San Diego, so don't worry about me going away. But, just in case you were wondering why I was quiet on so many topics in the past few months, it was because I was a little busy. ^_^
Friday, June 22, 2012
Article first published as Compression Garment Alternatives for Children with Autism on Technorati.
This summer has been a rough one for my son. He’s starting to regress from saying some words and spelling to nothing again, and his behavior has become more agitated every day he is not in school. We needed to do something.
We have been told about weighted compression vests before. Our son’s occupational therapist has mentioned weighted vests, and his response to them at school as part of his sensory integration therapy. Compression vests, much like weighted vests, increase the sensory input and helps some children with autism who suffer from to little sensory stimulation calm down. There’s some interesting research done by Lang et al which outline the sensory needs of children on the spectrum found here.
Anyway, I’ve priced the weighted compression vests before, and they tend to be pretty pricey (about $54 each). So we have been agonizing over whether or not to pick one up. But then, just by chance at a Costco, we saw something that made me think. Children’s life vests are made of Neoprene, much like a weighted compression vest. They are heavy, but not too heavy (not great for weight, but works), and they are easy to get on and adjust the pressure via the straps.
We were thinking of something for the kids anyway when we get to the beach for our summer vacation, so we picked them up to see what they would do. The change was dramatic, more than I was expecting. My son went from running around and jumping on the furniture to walking and sitting. It was a little too tight for him, but a little adjustment worked wonders later on.
The vests were about $30 a piece (we got one for our other son too), which made for a great comparison to a compression vest. It also gets him used to wearing it, so when we are at the beach he will have no trouble with it on. And the change made all the difference in the world for him.
Now, I’m not telling you all to go out and get a life vest for your child with autism, just because it works for my son. It may not work for your child. But it’s something to check out, and with the prices of vests at discount club stores like Costco and Sam’s Club, it might be a better alternative to expensive vests when you don’t know how well it will work for your child.
Thursday, May 24, 2012
Why is Autism so personal? Why do you have advocates of various Autism-Cause Theories fighting amongst themselves, or have parents desperately seeking out the latest and greatest treatment to make their children “normal”? Why is Autism so compelling, so intensive, and so consuming that parents are willing to spend themselves into bankruptcy just to get their kid to the point where they can hold down a job? It’s a tough question to answer, and it’s going to be slightly different for every parent. I think I can speak for most parents when I say, it’s all about the potential.
The Autism Spectrum is so diverse in it’s manifestation that it’s difficult to pin down what exactly is the cause. But one thing is very common: those with Autism definitely have a mind. They are smart, able to reason out much of their surroundings, and make connections between physical and abstract concepts. These are traits are clear signs of intelligence, but often they are hidden in the behaviors of Autism, such as sensory issues, inability to speak, issues with gross motor and fine motor skills, etc.
As a parent, we can see the potential in our children, if only these things were resolved. Some parents seek a “fix” to “cure” their children, others try therapy to teach their children to be “normal” in order to interact with others in society. More parents are seeking answers when there are none (currently), while doing everything they can for their children.
Regardless of the efforts being made by parents, society has been judging others based on the behaviors of their children on the Spectrum. Even though I know it was made in ignorance, I still remember a comment made by a patron of a local IHOP as we passed by, “I’m so glad my kids are well behaved”. Our son was 3, barely diagnosed with Autism, and we were still trying to wrap our heads around it. All of a sudden, through that comment, my son’s Autism was “my fault” as a parent, and I should have raised him better.
That seemingly passing remark became a very personal attack, perhaps because for generations (since the 60’s), it was believed that parents of children on the Spectrum were neglectful parents and they just allowed their children to run free without discipline. To this day prominent media figures have made this same assertion, in spite of the overwhelming evidence of genetic links of Autism and the growing research into environmental links. It’s a personal attack on parents when we already feel sensitive about the behaviors of our children. As such, many of us have delved deep into three aspects of Autism: Causes, Therapies, and Managing the Condition.
Autism is a difficult beast to get ahold of, even for researchers. It’s diagnosed based on observed behaviors, as opposed to blood tests, genetic research, or even physical appearance. Because it’s based on behaviors, anything that can cause that behavior can be technically called “Autism”. That’s why Autism is a spectrum of disorders to encompass any that have similar behaviors from clear genetic Fragile-X Syndrome kids to Asperger’s, PDD, and more severe Autism.
“The Cause” of Autism is just as elusive, because there are so many different disorders that can cause Autism-like behaviors. For instance, currently 26 genes have been identified with Autism, but if someone has a rare condition where they are unable to process gluten and cassein properly it can cause Autism-like symptoms. So while there are genetic links to Autism, it’s possible an intolerance and environmental stimulus can cause the same behaviors. Which is Autism? Both, by behavioral definitions. And that’s just the tip of the iceberg.
Therapies are wide and varied from the tried and true ABA therapies (proven through double-blind clinical tests to be effective) and various alternative therapies that can have potentially fatal side effects and no clinical testing for evidence of effectiveness (heavy metal removal, IV transfusions, etc.). Many, if not all therapies are expensive. Some are covered by insurance (depending on your insurance and State laws requiring coverage), and others, including a diagnosis of Autism, is not covered at all.
Before you think about a therapy for your child, consult your doctor. If he doesn’t know much about Autism or the therapies related to Autism, he will know where to look or to whom you should be referred. Always keep in mind three things: Safety, Effectiveness, and Cost. If it’s potentially life threatening, don’t do it. If it’s not proven effective, don’t pay for it. If it’s too expensive, don’t dig yourself so far into debt that you can’t get out again. If any two of these are aligned with the therapy, hold on to your wallet and walk away slowly. If the therapy meets all three, run.
I’m not going to tell you which therapy you should try, or which one works. I can’t, because I don’t know what your child is doing or anything about their situation. But I can tell you that often your child’s public school district will have experts on hand that can help guide you, if they don’t already provide many of the services themselves.
Managing the Condition
School is great, and understanding Autism helps, but nothing compares to the day to day operations that keep you and your family sane. As a parent of your child, you know their in’s and out’s. You know what seems to generally set off your child into a meltdown (though you may not know why), and you know your child’s habits. As such, you build up a home life that comfortable and safe for your child, and the rest of your family. Sometimes this causes struggles with siblings (both yours and your child’s), and often it will great raised eyebrows.
For example, we found that our son loved to wander. It’s a common trait in children with Autism, and he was keen to go walking around the block. Often we would find that he would just disappear, and we would go searching frantically for him. To solve this problem, we installed a double-locking deadbolt on our front door so you need a key to get in and out. We then installed a security door with double-locking deadbolt on the back door. Our back yard is completely fenced in, so he cannot wander out of the back yard. Eyebrows were raised when the security door was installed in the neighborhood, but once it was explained the neighbors were fine with the decision.
Day to day operations also include going out in public. You learn how to manage your child’s condition through tools (my youngest is easily distracted by an iPod Touch or iPhone), or through games (my oldest likes to be tickled). It’s all about finding a happy medium in managing your child’s behavior while in public. You also learn to avoid situations where your child’s behavior just can’t be managed. We take our children out to eat generally an hour before or after “rush hour”, so as to manage crowds and noise when we eat. We go to places we know both our children will enjoy, and make sure we move at their pace.
When you are a parent with Autism, you are pouring your entire lives into your children. There is no “ME” in Autism. And while you still find time to decompress (when the kids go to bed, generally), you really are trying to be a super-parent in helping your child learn how to be the best they can be. And so to all you parents of children with Autism out there, I salute you, and I know what you are going through. We are all in this together!
Thursday, May 17, 2012
My personal website was something I had a lot of pride in, because I wrote every bit of code from the HTML to the CSS entries. The problem is, it was a beast to maintain. For my blog I use Wordpress.org’s download that I’ve had to lock down significantly to keep it clean (after two reinstalls, I’m wavering on using Wordpress). And while I have some experience with Wordpress in the past, I’m not sure I want to use them to serve up my personal website. So I started looking at Content Management Systems (CMS).
In searching for a good content management system, I looked for something well known and highly customizable. I started with Joomla!, which has had a lot of recommendations and is apparently a very powerful CMS used in the web industry. I downloaded and installed it on my test domain to get a feel for it, and didn’t like it. It was way too cumbersome to manage for a little website like mine, and very difficult to work my way around in it. It took me two days to figure out each part of my website, and that’s a huge learning curve.
So, burned on that (and glad I didn’t replace my original website yet), I started shopping around. I came across a website that recommended a lot of different management systems, and mentioned Frog CMS. They said it was a small, simple CMS system that was pretty flexible for most things (easy to set up a blog with it, for example), and it was simple to use.
So, I visited their website http://www.madebyfrog.com/, to see what it could do for me. About five minutes reading through the extensions did it for me: I was ready to do my install. The download was simple, but the setup wasn’t that simple, though after a few tries and getting the right password for my MySQL server (very critical there!), it was up and running on my test domain. Within an hour, I had a great template with which to work, and another hour had the CSS styled exactly as I wanted it (minus a few little tweaks).
Migrating the initial web content from my old website took a little doing, but after another hour I had my website the way I wanted it, with all my images set correctly, Header and Footer built up and exactly the way I wanted it, and all without having to look too hard for each component.
The strength of Frog CMS, from what I can see, is that it doesn’t deviate too far from the standard web page setup. It keeps it simple for web developers who feel comfortable with HTML and CSS, and it’s really easy to create a nice HTML5 friendly website using any of the existing templates. All the templates are easy to reconfigure with a little CSS or HTML knowledge, making it a great platform for any website.
So that was my experience using Frog CMS. I’d recommend it to anyone starting a new website that just wants something simple and easy to configure without a lot of hassle. Granted, it’s not what your big office will be using to build their site, but for anyone just looking for great content management without the bells and whistles, this one definitely takes the cake.
Tuesday, May 15, 2012
Article first published as Five Things I Didn't Know About Autism on Technorati.
I’ve been told that having a child with Autism will change your life. Things will not be the same as they were before. I was also told that having a child will change things. But if you only have children with Autism, you don’t know just how different things become. So here is my list of things I don’t know are different:
- Raising Children: I’ve always been told that raising children would be challenging, and when we had our first child I wondered what all the fuss was about. Sure, he would need attention (which meant less time on the computer games), but other than that I had a great first child. My oldest was generally quiet, curious, and loved to play. Everyone told us we were lucky, until we found out that he had Autism when he had turned three without saying even two words together. ?Then things like his inability to sleep at night unless he was held, his fascination with mechanical things (wheels, fans, etc.) and his desire to stack and order became clear. But until it was pointed out, I didn’t know I had a challenge raising my son. We just worked with him as best we could without pushing too hard, and ended up with a generally well behaved child with the exception of the occasional melt-down when something triggered his Autism.
- Approach to Teaching: I’m a teacher by trade (or instructor, as I’m at the University), and an instructional designer. I spend a lot of time trying to think of ways to better approach my students, reach out to them, and help them retain the knowledge they want from me. Most of this is done on the fly while teaching in front of a class, with a lot coming from past experiences with different types of students. So when it came to teaching my son to write, read, or practice Math, it all came down to the basic skills I use with Adults that I try to apply to him. And I would get results that tended to last for a while, though they would occasionally regress (which is normal with Autism). ?The thing is, I didn’t know this was an issue. I thought this was what all parents did with their children. I mean, don’t all parents like to sit down with their child during their play and try to see what they do, how they react, and how you can tie in what they are doing with what they should be learning? Apparently, that’s not the case. Many parents out there trust in their children’s natural instinct to imitate their peers and parents to get a lot of their learning done. If you are a parent with a child on the Spectrum, you know that imitative learning is not common. So everything, from reading, to writing, to speaking becomes an exercise in trying to learn via other means. We’ve found that digital methods (multimedia and games) tend to work well with our sons, and we let them go with an iPad or iPod Touch. But again, this was something we just did, and didn’t know we had a unique and difficult situation.
- Bolting: When my oldest was younger, we would constantly walk with his hand in ours. Perhaps it was because I was over-protective, but he would often just take off and run without looking back. Occasionally I would let him get quite far before I would race after him, but I didn’t think much about it. We just learned that when walking with our kids, we held their hands. They felt secure, and we felt secure. We didn’t know about bolting. ?Bolting is an Autism trait that most kids on the Spectrum go through up to the age of 4. They will just take off an run without looking back, forward, or to the sides. Their Wanderlust is pretty well documented, and many children on the Spectrum have been endangered or lost because they have been unable to keep close to their parents. We naturally wanted to keep our kids with us, and so we always walk with their hands in ours. We didn’t know you were supposed to, we just did it.
- Diet: Our sons are picky eaters, but not in how you would imagine. One son will only eat meat, dairy products, eggs, and some breads (not white, but wheat, sourdough, rye, etc.). The other son prefers salads, dairy, all breads, and eggs. Occasionally we can get them to try something new at a restaurant or buffet, but they usually keep to their specific likes and dislikes. So, we kept them on the diets they like, making sure they get as much from the four food groups as possible within their constraints. ?What we didn’t know was that persons with Autism tend to have specific likes and dislikes because of the type of food. Not so much because of taste (though that is in the equation), but rather texture, color, and smell. My oldest likes his textures more firm like cheese, or crunchy like chips. My youngest loves soft breads with crunchy chips, crisp lettuce and veggies, and firm cheeses. It wasn’t until we learned that other children learn their likes and dislikes more from social queues (I don’t like lima beans because they are not popular in my cartoons!), as well as flavor. Rarely is it because of texture. That’s unique to Autism.
- School: Our boys both go to a special education class where they focus on the skills necessary to become mainstreamed within the classroom. We have regular meetings with the teachers, keep in daily contact with them through notes in a notebook, and try to reinforce what they do at school in the home. I had assumed this is what every parent did when they were concerned about their child’s education. Apparently I have been wrong. ?Teachers look to the day when working with parents becomes the normal, established way to reach all children. Teachers can only do so much, particularly when you have 20 to 30 kids to one teacher (and no aides). They want all parents to come to them for a plan, and back them up when it comes to trying to find ways to get their child to learn. But apparently parents get defensive when teachers suggest goals with which parents could help at home, and teachers are slowly getting jaded or hesitant to suggest anything. I can often pick out a teacher who has been in the business for a while, because they are hesitant to mention anything negative about your child. It shouldn’t be that way. Teachers should be telling the parents where their child is struggling, and with the parents help make a plan to help their child achieve their potential.
So those are the five things I didn’t know going into parenting a child with Autism, and I’m glad I’m still learning. It’s a great opportunity to learn how to help your children.
Wednesday, May 02, 2012
Article first published as Flame Retardant Chemicals and Autism? No Clear Connection on Technorati.
While reading my daily articles I came across an article in the Press Release section of the San Francisco Chronicle called "Study: Autism Linked to Flame Retardants - The Futon Shop's Chemical Free Mattresses are the Next Step in Helping to Reduce Rates of Autism". It sites a research study done by Irva Hertz-Piccotto, Ph.D. chief of the division of Environmental Health at the University of California Davis that supposedly proved a connection between PBDE's, which are flame-retardant chemicals used in furniture (and other things), and Autism. It's a PR piece done by a furniture company that doesn't use PBDE's, and so they are trying to "inform" (or better yet, scare) consumers into purchasing their products.
Anytime I see any claims like this, red flags fly all over the place. I found it interesting that so important an environmental connection as this would be so unknown, and only first published by a furniture company. Nope, something wasn't right. So I pulled open Google Scholar, and searched for the research paper.
It wasn't easy to find, but I found the article in the journal Environmental Health (2011, 10:1). The article is located here: http://www.biomedcentral.com/content/pdf/1476-069X-10-1.pdf, if you care to read through it yourself. The research project was more of a survey, looking to compare PBDE concentrations in children with Autism and those in the control group. The qualifiers were that though current levels could be influenced by a number of conditions (such as diet, current exposure, previous exposure, etc.), the hope was a possible connection between fetal exposure to PBDE's through the mother would reflect an environmental cause for Autism.
The research pulled plasma samples from the Autism group and the control group. Their PBDE concentrations were tested, and compared. The results? "Children with autism/autism spectrum disorder and developmental delay were similar to typically developing controls for all PBDE congeners, but levels were high for all three groups." So, based on this research, there was no difference between concentrations of PBDE's and a correlation between PBDE's and Autism. Now, that doesn't mean there isn't any possible environmental triggers or causes, but it just points out that the possibility of a connection between PBDE's and Autism are remote.
So, to the Futon Shop, the company that made the claim, I would say they need to check their sources a little closer before they try to use scare tactics to sell their products. I'm all for naturally produced and protected products, but I'm not a big fan of using Fear, Uncertainty, and Disinformation by any company to induce sales.