One of the mothers in this video put it better than I have ever heard when she said as parents we were drafted. I concur with this statement. And if you look at the definition of the word drafted it truly does fit. The definition can be found HERE. The minute definition of the word is: “the taking of supplies, forces, money, etc., from a given source.” And that definition hits the nail on its head when you are referring to autism. When you consider the amount of supplies (educational, medical, supplements and the like) it takes to raise and treat a child of autism the amount was (in 2007) a staggering $2.3 million dollars from diagnosis until death. Those supplies take the money that precious few of us in these economic trials can afford. And the forces are us the parents who refuse to settle for second best where our children are concerned. And while we refuse to settle our forces are taxed to the breaking point. Autism can turn solid relationships into train wrecks because of the isolation factor, because the ignorant just don’t understand and (in some cases) don’t care to learn what we, the families live with. None of us wanted to be involved in this war. None of us volunteered to have a child with autism. But yet here we are; trying to make the best of a horrendous situation.

I rewatched the video done by Autism Speaks called “Autism Everyday”. It can be found HERE. I have seen this video when it first came out back in 2006. The video was made to educate the ignorant (the public at large) of what living with autism is like. It was designed so that the ignorant think twice before bitching about our children’s behaviors when they have melt downs in the  local Wal-Mart. It was designed to keep the judgements of the ignorant at bay. I don’t know how successful it was but I think it was a well done video none the less.

After awhile though you get pretty thick skinned when it comes to the ignorant not being accepting of our children. For some of us it takes a long time, for others (like myself) who don’t give a damn what people think it happens more quickly. My attitude frankly is the very thing that has helped me survive the “hell days of autism”. My rational has been and continues to be; most of those people I won’t ever see again anyway so why should I worry about what they think. But like any adversity what you get from it can be a positive. What you make of it can be a positive. How you treat the autism and subsequently the individual with autism will have a MAJOR impact not only on yourself but on that of your loved one.

My biggest dream/prayer in the early days was that autism would be removed from my son and our lives. I thought God owed us this. I was wrong in more ways than I can count. Autism has been a uniting force for my family. Autism has actually saved my then shaky marriage, helped form a bond with my daughter that will never be broken and probably saved my soul to boot. In essence autism has been a win-win situation for me and mine. And for those in the immediate and extended family and friends who don’t bother with us anymore I have this to say: THOSE THAT MIND DON’T MATTER AND THOSE THAT MATTER DON’T MIND (Dr, Seuss was a great and wise man). Yeah, I have lost what I thought were good friendships. But my REAL friends and my REAL family are sticking with us. The list is short but I have always believed in quality over quantity anyway.

My next biggest dream/prayer was for JR to be able to speak to us. That dream has been addressed via his AAC device. It may not be his physical voice but it is none the less his thoughts, needs, wants, and emotions. Frankly, I don’t care if the voice comes from his voice box or one that is computer generated. As long as he can EFFECTIVELY and EFFICIENTLY communicate is all that matters.

Autism is like anything else folks. What you do with it will be the deciding factor of how smooth the journey is. For now our journey is seeing a smooth and quiet patch of road. That may change and we are prepared for it to change. As a family unit we are a united front who will face any adversity with our heads held high and we shall over come. Great things can come from adversity if you open your mind and heart to the journey.

I have decided to write on this topic because we are moving JR from his dynavox V to an iPod touch and I was asked to by the editor of the ASA newsletter for the greater Harrisburg area. There are several reasons for this move. The first was an article in USA today about the iPod/iPhone being used as AAC’s. The article was written in May of last year and can be found HERE.

To begin the dynavox is in many ways like the PECS. As an AAC is a great “jumping off point” when first being introduced to the world of AAC’s. It is a great machine and when it’s not being sent back for repairs it does the job it’s intended to do. It allows those who are non-verbal or with limited speech to communicate with the world. It is also a computer (windows XP) that allows access to the internet, uploading of educational software, and game playing.

All that being said; like everything high tech it does have its drawbacks. To begin the company markets this device as being very sturdy. Speaking from practical experience I can say that just isn’t so. The company states that it can take a drop of up to 10 feet. Within the first three months of ownership of the unit it was accidently dropped in the gym at JR’s school from a coat hook that was less than 3 feet off the floor, shattering the touch screen. Every year since JR has had the unit something has happened that it has had to go back to the company for repairs. From January of 2009 until August of the same year the unit has had to go back five or six times. One instance was for the hard drive crashing that warranted replacement. This after 3 or 4 returns for the same issue. Another time was due to the pin set in the battery compartment being bent. The company itself is rather reluctant to do the proper repairs the first time and it took our school district’s special education director to call them and basically make them do the work. Thank God the school district took my advice and got a four year extended warranty for the unit. Add to all this the prohibitive cost of the unit (the Dynavox V (or 5) runs $7,820 and the V Max is $8,420) and without financial assistance from your school district (first payor) or private insurance (2nd payor) or medicaid (3rd payor) this unit is out of reach for many families ours included.

The one advantage the dynavox does have though is if you or your loved one has limited fine motor issues the screen is relatively big with an 8.5  inch diagonal viewing/touch screen. The touch screen once calibrated properly is very responsive. Updating the software is relatively painless if you have internet connection. Make sure though that you have anti-virus software installed before accessing the internet. Remember this is a microsoft operating system. And we all know how prone they are to attack from hackers and malicious viruses.

However, when programing the dynavox for you or loved one’s personal preferences is no easy feat. The unit comes with an 8×11 heavy duty binder that is pretty much filled with instructions on how to program it. That should give you an idea of the complications involved in the process. In addition to the user manual it comes with a keyboard and mouse that plug into the USB ports. These are relatively cheaply made but functional. When initially setting up preferences you will use these a lot. For more info on the dynavox please go HERE.

The comparison of the dynavox to the iPod touch on the other hand is the difference between night and day. The dynavox weights about 5 pounds and is a bit cumbersome. The iPod weights in at about 4.05 ounces is hand held and very portable. The iPod has a touch screen as well. The speaker output in a loud environment isn’t the best but externals can be purchased for the unit beginning at nominal charges and traveling into the hundreds of dollars. For options on speakers please go HERE. Another site I was made aware of by a reader’s comments after I posted this entry yesterday can be found HERE. All though they don’t appear to have the external speakers that JR’s iPod will need they do have a large assortment at VERY reasonable prices. Or just do a google search using the phrase “iPod external speakers”. We are opting for THIS external speaker system. It amplifies the speakers and acts as  a protective case as well. The cost of an iPod touch runs in price from $199.00 (8GB) $299.00 (32 GB) and $399.00 (64 GB) and if you go HERE Best Buy is running an on-line only discount on all three. It isn’t a lot but every little bit helps. You can also (and I highly recommend it) purchase extended warranties for this device just as you can for any electronics. We purchase all of electronic extended warranties from a group known as square trade. Their website can be found HERE. Consumer reviews can be viewed HERE. A warning in order to get accidental breakage coverage via square trade the warranty must be purchased within 30 days of the purchase receipt for the electronic device.

Now for the nuts and bolts of what I believe makes the iPod an exceptional unit over the dynavox. The program that turns an iPod into an AAC is called Proloquo2Go. The application costs an additional $200.00 (don’t be alarmed though as most of the apps are reasonably priced for this device and some are free). THIS on-line tutorial makes this device so easy to program even I can do it! The screen is a small but very crisp 3.5 inches. You can download music and movies to the unit and you have internet access anywhere there is a wi-fi connection. And we all know that’s just about everywhere these days.

There are many applications for our children and if you go to HERE. The blog is called the speech language pathology sharing. There is an entry that lists them all and it is updated regularly.  Also there is a forum that deals with the iPod touch in unison with AAC.  This form focuses on the Proloquo2go application. The moderator is very informative and he partnered with Samuel Sennott and Eric Sailers. His name is David Niemeijer. David is actually a PHd in the environmental sciences. He came to programming this software because of a friend who needed better than what he had. Necessity truly is the motherhood of invention. You can access the forum HERE.

Two other distinct advantage of the iPod over the dynavox is who makes the iPod. This is an Apple product and let’s be honest here; Microsoft can’t touch apple for stability and security. When we can we will be making the switch to an all Apple household. The second advantage is so many have iPod touches that our children won’t stick out like sour thumbs carrying one around.

UPDATE: I found an article that will help extend the overall battery life for the iPod as well as the recharging frequency for the device. The article can be found HERE.