February 2009 Archives

February 19, 2009

Fluoxetine Trial Results: What It Means

Science Daily ran this story regarding the trial of fluoxetine for children with autism, as sponsored by Autism Speaks.  Fluoxetine is a drug meant to assist in treating the symptoms of autism for children.  It is not a cure, but a treatment that was given a serious clinical trial, and was found to be statistically no more effective than a placebo.  Naturally this came as a disappointment for the company developing the drug, and for many parents looking for some help in managing autistic behavior in their children.  But the real story here isn't about the drug, but rather the trial itself.  The fact that there are serious clinical trials for Autism is a huge step toward understanding Autism itself.  Clinical research, regardless of it's outcome, is quite often the best method of learning more about a condition.  I'm proud that Autism Speaks organized this trial, and the community they represent is willing to look at the condition of autism with a serious, scientific eye.  Well done!

February 17, 2009

Accepting Autism: Cure vs. Explore

This morning I browsed through my news feeds, and came upon this article by Maya M entitled Accepting Autism. The author was responding to an article written about parents who chose to take their child to Mongolia in search of a cure for his autism, as "Western Medicine" had failed them.  She then went into detail regarding her own personal pain she suffered when her son was diagnosed with Autism or something like it earlier on.  I love articles like this one, because it speaks to all of us who have ever had the diagnosis mentioned or suggested to us.  We start by researching Autism through various websites and forums, learn all the fads and "cures" that are supposed to bring autistic children to their senses, and finally move into despair, frustration, and depression when we feel like there is nothing we can do to bring our children into the "normal" stream of society.  And that was her argument:  we are trying to bring these special children into what is considered "normal".  We want everything to be normal about us, him, and so on.  Why?  What is normal?  How would you define normal?She mentioned talking with a couple of people who were autistic as adults, and their desire for acceptance, and not a cure.  A cure suggests that there is something wrong with those with autism or autism-like symptoms.  There isn't, because it's part of their personality.  If you "cure" them, you are making them into something that they are not.  Imagine "curing" Tesla, Einstein, and others that have given our world so many great things.My great comfort in this article is how to handle the diagnosis: 
  1. Don't succumb to depression.  This is a tuffy for a lot of parents, as it was for me.  Depression doesn't do you or your child any good. 
  2. Don't be obsessed with cures or treatments.  It doesn't matter if your friend's cousin swears drinking potato brain juice cured their child's autism, because many of the fads and "cures" are ineffective at best and fatal to the child at worst. 
  3. Accept your child for who he/she is.  Autism has to do with genetic/biological hardware, and not some magic spell cast on your child.  Accept it, and work with it.
  4. Be careful with mainstream treatments if they are aimed just at forcing normality down your child's throat.  Yes, occupational therapy, speech therapy, and the like are good, but if your child resists, don't force it.  Find something that your child doesn't resist.  Normality is an arbitrary assignment. 
  5. Build your child's self-esteem. Do not try to dissuade him from his "precocious" or "unusual" special interests. Help him to develop them into possible means of occupation.  These skills can be useful, and if your child is really good at them, then people will accept them for who they are, for the skill.  It's unfortunate that is the case, but it is none the less true. 
  6. If your child is still non-verbal at age 3 - 3.5, consider teaching him an alternative method of communication, such as spelling, sign language or picture-exchange communication (depending on the child's inclinatons). Never try to neglect his generic communication (pointing, screaming etc.) with the hope that this will "make him speak".
  7. Be very understanding. Your child has tantrums because he cannot communicate his desires to you or because he is in a sensory overload.  Getting angry may happen eventually, but it doesn't do any good, or help the situation.
  8. Care for the financial status of your family. Try to keep your job, if possible. Run away from every "expert" promising to rescue your child from the abyss of autism by separating you from your money. Even decent therapies sometimes aren't as good as toys and vacations that can be bought with the same money.
  9. Contact other parents in your situation, autistic adults, other disabled people.  Get involved when you can, so that others can feel helped and supported.  
I loved this posting.  It's just what every parent with autism needs to hear, particularly at the outset of the diagnosis.  I would highly recommend it to any parent who found out their child was diagnosed with autism, and is wondering what to do next.

February 13, 2009

Deploying Final Cut Pro to a Lab: Multicast ASR

For the past couple of weeks I have been working on and off on a project to deploy Final Cut Pro in a fresh install for our Macintosh lab.  Previous to this the process was to image the machines and then install Final Cut Pro through a script.  Then on each machine I would need to enter in a site license for the software.  This took a lot of time, usually two days for a sizable class of 8 or so.  And, it didn't give me a huge margin of error either.  At first I wanted to do something with NetBoot, because it makes it so easy.  Just set the NetInstall image as the default image on the server, and then deploy by booting the system off the NetInstall image.  it's really easy to set up, really easy for anyone to deploy.  Unfortunately, it doesn't handle large images very well.  And when I say large images, I mean large images over 38 GB.  I had often wondered why, until I took the Mac OS X Deployment class, and found out that NetBoot uses a unicast method of installing, which is very inefficient.  It actually surprised me that was the case.  The only other option that was even remotely feasible would be to use a multicast ASR server.  Every Macintosh (either server or client install) supports the server aspect of this project, so it's very easy to deploy.  The only drawback:  It requires understanding of the command line.  Here is the process I took in order to get Final Cut Pro installed. Problems:  
  1. Fresh Install of Mac OS X 10.5 with all necessary updates
  2. Fresh installation of Final Cut Pro, Motion, Color, and Compressor (these are the Pro classes we offer here in Edtech).  
  3. Practice files for the class.
  4. License key already included. 
  5. An administrator and a student account setup and ready to go.
I began the project by going through the Modular system image creation process.  In this process, you use a sparse image to install your OS and software, place your necessary files, and manipulate any configuration needed for the final deployment.  This is ideal for initial OS setups and system images.  So I installed the OS from a disk image of the install DVD with the following command: 
sudo installer -pkg /Volumes/Mac\ OS\ X\ Install\ DVD/System/Installation/Packages/OSInstall.pkg -target /Volumes/MacintoshHD/ -verbose
Now, I could have added a reference to an XML file that would have removed all unnecessary installations (like printer drivers), but the default install was good enough for the project and hand.  In this case, the MacintoshHD drive is actually an external FireWire drive.  I could also have done this on a machine in Target Disk Mode, but I thought this would  be sufficient, and it saved a lot of time, actually.  Once completed, I installed the updates.  To find out what I needed, I actually booted up a machine with this default install and ran Software Update, which gave me the names of the packages.  I then downloaded the disk images, moved them to my machine, mounted the images, and installed with a command like this: 
sudo installer -pkg /Volumes/Mac\ OS\ X\ Update\ Combined/MacOSXUpdCombo10.5.6.pkg -target /Volumes/MacintoshHD/ -verbose
I kept the verbose switch on just so that I could see when it was done and judge when I needed the next update.  When I got to the Quicktime update, I ran into a problem:  You can't update Quicktime to 7.6 on an non-booted system disk.  That through a wrench into the whole "modular image" process.  Not to worry though, it didn't set back my image creation.  Once I finished with all the updates that I needed, I then booted off of the FireWire drive and created my users in the directory.  I began with the admin account, which I used to install the remaining updates and Final Cut Pro and Motion Content from their respective disk images.  The installation let me enter in my site license for Final Cut Studio, and saved me a lot of time on each machine.  I than ran updates for The Pro Apps, which took only a couple more updates to finish.  Once done, I created my Student account with the standard login, and rebooted back into my regular computer. Note:  Do not try Final Cut Pro at this stage!  It will create the scratch disk with your UUID, which will make it unusable for any other machine after imaged! I found this out the hard way.So now I have a system that is completely imaged, has the users created and ready to go, and has not launched Final Cut Pro quite yet.  Now I need to create my disk image that I'm going to use for my restore.  This is really easily done in Disk Utility, particularly if you have the image on a FireWire drive.  Open Disk Utility, and then select the disk volume you created.  Do NOT select the physical drive!  That would result in a larger image than you need, taking up your entire drive.  Want to learn why?  Take the Mac OS X Deployment class.  ^_^  Once the disk is selected, click on the New Image button at the top.  It will then let you name it (this is just the name of the new image, not the name of the disk), and ask you which type of image you would like.  I named the file ClonedImage.dmg.  The image needs to be Read Only, and Not Encrypted.  If you choose, you can make the image compressed, though it does take a little away from the performance.  I kept it as uncompressed for simplicity's sake.  Then settle in, this can take a while.  For a 38+ GB image, this can take almost up to an hour (time varies on the machine you use, RAM size, processor speed, etc.).Once it's done, click on Disk Utility's Images menu, and then select Scan Image for Restore.  This can take some more time, though not as much as creating the disk image.  So settle in, have a good book to read or clean out your email.  Once done, it's ready for deployment.  Some may suggest that you fix your permissions on the disk before you get to this point.  I've not needed to so far, but it is a good practice to adopt.  This would be a case of do as I say, not as I do.  ^_^ Now copy your new image to the "Server".  It can be Mac OS X Server, or a Mac OS X computer.  Either will support the ASR command.  I chose to use a Mac OS X Server that also had NetInstall images for the Macintosh 10.5 Leopard Install DVD.  You will know why in a minute.  I copied the file to the root directory ( / ) for convenience.Once copied over, boot up the new machine and log in as an Administrator.  Open your Terminal, and create a config.plist file somewhere on the system.  The config.plist file should have at least the following parameters: 
defaults write /Volumes/Backup/Apple/Images/config "Data Rate" -int 6000000defaults write /Volumes/Backup/Apple/Images/config "Multicast Address" 
I put it in the root directory as well for convenience, though you can place it anywhere you can remember it.  Then enter this command: sudo asr -server /config.plist -source /ClonedImage.dmgPress enter, and you should get a notification that your ASR server is ready to begin multicasting.  Once done, you now just need to get to your computers you wish to restore and run the restore image there.  In this case, I find it simpler to boot off of the Install DVD image.  By making a NetInstall image, it's easy to do and doesn't require multiple disks (and the disks don't walk away unexpectedly).  It also guarantees that your restore system is on the same subnet as your Server, and will have an assigned DHCP address.  Once booted off of the Install DVD, select your language and then click the continue error.  It will ask you if you want to run the install, instead click on the Tools menu, and then select Terminal. Now you should only have the Terminal window open.  Here, type the following command to start the restore, assuming your ASR Server has an IP address of asr restore -source asr:// -target /Volumes/Macintosh\ HD/ -eraseThis command will search for an ASR server at that IP address, and then erase the target drive and restore from that image.  Then let it go!  For my image it took about 5 hours to complete, but just about all the machines completed the restore at almost the same time.  So I could have completed one install or 22 at the same time from the same server, and saw little difference in the time it takes to make the image.  Now, this is the process I used.  It worked great, and our Compressor class (the guinea pig class for this image) ran just fine.  But what if you don't have the time, or the confidence to run the command line tools?  You can do roughly the same thing with NetRestore, which is currently no longer in development, or Deploy Studio.  Both of these tools can do the same thing I do here, but have a nice GUI interface and management is simpler.  So you may ask why I chose to do it the hard way?  Because I love the command line, and I want to be sure I have the process down pat.  After all, unless you understand the process behind the scenes of a GUI tool, what do you do when the GUI tool doesn't work or has an error?  Where can you troubleshoot the problem?

February 10, 2009

PTEN and Serotonin Transporters and Autism

The neurologists at MIT have been hard at work trying to unlock the genetic predisposition for Autism.  In their trials, as reported in their article in the Proceedings of the National Academy of Sciences of the United States of America (PNAS), they found two genetic markers that can account for the social behavior and enlarged brains found in many children with autism (24 percent, in fact).  The results were interesting.  Their research focused primarily on female mice, and mice in general.  It was discovered that the PTEN gene and Serotonin Transporters each have an effect on the brain, causing increased brain growth.  Together, they have an accumulative effect, increasing brain size even more.  There was also a correlation between social interaction and brain size identified, which reinforces the theory that increased brain size (and density) is related to autistic behavior.  This is huge and comes at the right time when many parents who were led to believe their child was "given" autism by vaccinations, and that theory having been proven to be false based on several studies and the outing of fraudulent materials as the foundation for such a claim.But, before we get too excited, there are a couple of caveats to this study:  It hasn't been conclusively proven that the same genes in humans have the same results.  It also doesn't explain instances of autism-like behavior that doesn't appear to be related to brain size at all (see my previous statements on allergy autism).  But it is a piece of the puzzle that has been discovered and matched.  That's the important thing.  I would hazard a prediction that all behavioral disorders will be linked eventually to genetic markers.  So what do we take from all this?  Progress is being made on the conditions needed for autistic behavior.  Does this change the lives of those children with autism?  It could, if it were proven to be a genetic condition that would need medical attention.  It would then give medical insurance all the more reason to fund Autism treatment.  But for now, we parents are still left to find the best way to help our children's brains work through and with their autism to become productive members of society.  That means working with psychologists that are helpful and willing, finding a support group that is dedicated to assisting the parent, instead of suing industries, and locating materials that provide real assistance.

February 7, 2009

The Lie that Started It All: Doctor Who Claimed MMR Caused Autism Falsified Reports

In 1998, Doctor Andrew Wakefield published a report in The Lancet medical journal claiming the MMR vaccine caused Autism in 8 out of 12 children within days of receiving the vaccine.  This set off a scare that caused a drop in vaccinations for measles, mumps, and rubella from 92% to 80%.  While this doesn't seem like much, a population requires 95% vaccination to receive "hurd immunity".  Well, as the Times Online reported, the doctor falsified reports in the journal entry.  There was only one case where autism-like symptoms occurred within days of the shot, while the rest had concerns about their behavior before the vaccination was given.  So why is this particularly disappointing?  Because it was a doctor that gave this information.  A doctor, who threatened thousands of children with childhood measles, mumps, and rubella, because he caused an unnecessary scare and untrue link to a genetic condition.  But the damage doesn't stop at those children at risk because they were never vaccinated for these deadly diseases..  N0, he set Autism research and treatment back 20 years by convincing people that vaccinations were the cause of Autism.  So instead of research scientists checking on development of the brain during this period, they were distracted by angry parents duped by this one doctor.  The pain isn't in those children at risk, but those children who with autism, whose development was stunted as people squabble over the actual cause.  Parents would then claim that if they skipped shots, ate only tea leaves, or stood on their heads to "get the toxins out" would improve, even though the children still had obsessive, repetitive behaviors quite typical of autistic children.  Their children were not being "cured", but rather their brains were performing the miracle it is so capable of doing:  It was learning and developing in spite of the increased neurons in their brains.  I sincerely hope that Doctor Wakefield understands the full impact this little desire to get published has had on the world, and on the Autism community.  I hope, somewhere, he is reading this post and realizes the pain that he has caused parents of those precious children with the unique and diverse qualities resulting from having a more dense brain than "normal" children.  Sir, shame on you.

February 2, 2009

Estate Planning for Special Needs: What to Do When Your Special Needs IdentiChild Is No Longer A Child

Last week I attended a very informative session with Matthew Wiese, a lawyer from Clyde Snow and Sessions.  He graciously provided a free seminar on behalf of the Autism Council of Utah for parents interested in learning what to do for their children when they are no longer children.  Sometimes it's hard to believe that your little child with autism may one day grow up, and you will not be there to protect them from others, and even from themselves.  The first thing we talked about was the difference between no will, a will, and a trust.  With no will, the State will divide up your assets equally among your heirs.  Generally this is what you would want, right?  But what if you have a special needs child that would require more of an inheritance?  The State does not have the means to determine such a necessity, and as such the benefit will not be passed on to the child that needs it most.  Next we have the will.  With a will, you can designate a larger sum to go to your special needs child.  Of course, this is seen as income for the child, which could therefore disqualify that child from any public Social Security benefits for which they would otherwise be eligible.  So while your intentions are in the right place, it is not necessarily going to benefit the child if that child is unable to manage the funds during the disqualifying period.  Lastly, there is the Trust, specifically a Special or Supplemental Needs Trust.  This allows you to provide supplemental support for your special needs child without disqualifying them for any benefits for which they are eligible.  Some points to note regarding the Supplemental Needs Trust: 
  • Identify and understand the public benefits for which your child is or may be eligible.
  • The Trust must be irrevocable, so it cannot be changed after it is created.  Once you choose the assets, you lose control over them to the Trustee. 
  • Although irrevocable, you can draft it with enough flexibility to allow amendments for changes in laws, state of residence, etc. 
  • The child does not have the right to demand access to the assets of the Trust, meaning they can't decide to pull it all out and blow it in Vegas. 
  • Payments from the Trust for food and shelter will be treated as income for Supplemental Security Income purposes, and reduce the SSI benefit. 
  • Understand the implications of "in-kind" income, the "presumed value" rule and the "one-third reduction" rule for SSI beneficiaries. 
  • Do not make distributions of income directly to your child.  When payments for food or shelter must be made by the Trust, the trustee should make the payments directly to the landlord, vendor, or other service provider. 
  • Payments for non-food or non-shelter items have no impact on SSI benefits.  Therefore, to the extent possible, your child should use his or her SSI income for food and shelter expenses and the Trust should pay for non-food and non-shelter items. 
  • Distributions from the Trust can be considered as income for income tax purposes, but not as income for SSI purposes.  
  • Undistributed income is taxed at the compressed trust rate for complex trusts. 
  • Life Insurance purposed by the Trust on the life of an important caregiver for the child may be appropriate for advisable.  
  • Understand the SSI rules regarding housing expenses.  Payments by the Trust for rent, a mortgage, real estate taxes, gas, electricity, water and sewer, garbage removal, property insurance required by  a lender or condominium fees that include the above items will be considered as countable housing expenses by SSI and result in a reduction of the SSI benefit by one-third of the federal benefit rate, plus $20.00.  Payments by the Trust for  a telephone, cell phone, cable television, computer, Personal property insurance, paper products, repairs, capital improvements, staff salaries, laundry, and cleaning supplies are not countable housing expenses.  
  • It may actually be in your child's best interest to forego public funding or receive a reduced level of benefits.  
  • The trustee must keep appropriate records and adhere to traditional trust rules for investments, accountings, etc.  
  • You get to choose the trustee who may be one or more individuals or a corporate fiduciary, or both. It's also important to choose alternate trustees, as the trust can often outlive any one trustee (or beneficiary).  
One huge benefit of a Trust is that it's possible to set it up so that family can contribute to the Trust.  So any birthday or holiday money can be placed in the Trust for the long-term benefit of the child.  Of course, one thing that was brought up was the issue of Guardianship.  Many special needs schools will tell parents that they need to get guardianship of their special needs child by the time they are 18, or they become Wards of the State.  This is not true, and it's very scary to think that parents find this out the hard way.  While it is true that it is easier to get Guardianship of a special needs child before they are 18, it's possible to go through the process at any time, as long as the special needs child is represented by legal council.  If one does not seek guardianship, the special needs child is not taken on as Wards of the State, but rather left to their own devices.  It is highly recommended that Guardianship is sought for your incapacitated child before they are 18, because once they turn 18 the HIPA laws go into effect, and you have no control over your child's welfare or medical needs.  An alternative is Power of Attorney, where a child relinquishes the legal right to enter into contracts, and can extend to medical and other physical aspects of the care of the child.  It does not, however, extend to financial welfare, which would then be covered by a Trust.  This was a very informative seminar, one that I was grateful to attend, particularly when permission to publish the handout material on my Blog was granted by Mr. Wiese.  If you have any questions regarding the creation of a Trust or gaining Guardianship, feel free to schedule a meeting with a qualified attorney.  Also keep in mind that while the amount of the Trust is not important, the cost of the process may be a bit steep.  So contact a lawyer to find out how much it might be, and start saving.  It is definitely worth it.
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