Sign Language Help

Sign language is not simply for the deaf or mute. Sometimes it augments communication for those whose speech is limited.

We found that Macayla could use some signs to help communicate for a short time. She learned a version of the sign for "more" and that was helpful, especially when she wanted to play in the water. She would often sign "more" to let us know she did not wish to stop.

One helpful resource is ASLPro.com. It is free to use their website and they provide video demonstrations of the signs. They do accept donations to help keep this wonderful resource going.

Transferring and Positioning - Maxi Slide Sheets

My wife is a nurse and has been training with a product called Maxi Slide Sheets. They are a really neat product for transferring immobile patients from one bed to another or for just moving a patient up in the bed for repositioning. Here is their PDF showing the product in use, however the training video does it more justice.


For us, this would have been great on several occasions as we needed to reposition Macayla for bath (which required that we spin her completely around with her head at the foot of the bed) or to just move her up closer to the head of the bed. Macayla grew to be a very tall and was heavy to move. She was dead weight much of the time and it was not always comfortable for her when we moved her. These sheets would have been great! Unfortunately, I cannot seem to find any American suppliers carrying them on their websites. Several European companies seem to though. Obviously, it is for sale here for hospitals but not the home yet.

Research into Lysosomal Storage Disorders

This article was shared and it sounds as if this discovery my offer some direction for future medicines and therapy for diseases such as Battens. The information in the article is credited to Baylor College of Medicine. Click here to read the article.

DNR Stands for "Do Not Resuscitate" not for "Do Not Relay"

Recently, I was interviewed by a local news station about school policies concerning children with DNR's. Macayla had a DNR while she was going to school. From my understanding at the time of interview, the school district wanted a policy in place that did not allow them to enforce or enact the DNR during a crisis requiring life-saving measures. In other words, they would perform life saving measures until EMS or other medical professional arrived. I later learned that the real story was the school district wanted a policy that they were not responsible if the DNR was not passed on to medical personnel such as EMS. This is another issue entirely.

Augmentative Communication for iPad & iPhone

We really wished we had learned more about aug com (augmentative communication) much sooner with Macayla. It would have helped her put some skills in place earlier while she still could. However, it did not make sense for us to have the very expensive computerized aug com systems with touch screens that was out at the time. Amazingly, Apple's iPad and iPhone have revolutionized the availability of this technology at a fraction of the cost.

iPads have larger and more accessible screens, but iPhones or iPod Touch work for those with the fine motor skills to manipulate items on their screens. (An iPod Touch is just like the iPhone minus the phone capability.) They all have built in cameras. The iPhone and iPad with cellular connectivity have the benefit of not needing a wifi network to access the internet. In other words, you can access the internet anywhere. The iPod needs to be connected to a network wirelessly. For the non-techies out there, this may sound a bit overwhelming, but these devices were designed by Apple to be intuitive and to think like we do. People who have never spent much time on computers figure these things out very quickly. Plus, when they are not in use for aug com, they have all the functions of a laptop. Email, web, word processing, photos, movies, calendar, music, etc.