Technology Will Help Ella Live Independently

Technology is a big part of our lives these days. It helps us with learning, shopping, and communicating, among other facets.

Kids today rely on technology for many of their needs. But what about kids with spinal muscular atrophy (SMA)? How do they fare in this world of technology? What devices do they use? How does technology help them to live independent lives? I can only answer these questions in terms of my daughter Ella and how she uses technology.

Recently, we had to buy a new dishwasher. We went online and purchased one after extensive research. When it arrived, we noticed that it was Wi-Fi ready. We wondered what the point is of having a dishwasher connected to internet.

Two years ago, we bought a new garage door, and it also was Wi-Fi ready. We downloaded the app and found we were able to open and shut the door via the app. It has come in handy at times.

We now have to buy a new refrigerator — and lo and behold, they are all Wi-Fi ready.

The more I thought about it, the more I realized that Ella will use these appliances and household items as she grows up and becomes independent. Having them connected to the internet would be ideal for her. She could control many aspects of the items with a smartphone. If someone loads the dishwasher for her, then she could start the machine on her own and not have to worry about pressing (or even reaching) the buttons to control it.

While driving, one could access the garage mobile app and open the door to park without using the button on the garage door opener, which may be hard for some to push. 

Ella uses technology every day. She communicates with her friends online, plays games, and does some shopping. She uses a virtual keyboard most of the time and can have more than one device running at a time. She uses the touchpad mouse instead of a free-standing mouse. She has a BiPAP and a feeding pump, as well as a pulse oximeter.

We have an Amazon Echo, and she uses it to listen to music and add to our shopping list. All of this technology helps her quality of life flourish.

Ella is growing fast. She’ll be in fifth grade this fall, and before we know it, she’ll be all grown up and ready to take on the world. We have to be cognizant of the types of technology we have in our home to better support her independence. We do hope that someday, she’ll be able to live on her own with an assistant. Toward this end, we have to explore how technology would help her gain as much independence as possible.

Technology changes every day. The world finds better and faster ways of completing daily tasks. The world for a person with SMA can be a great place if they utilize the many features that technology has to offer. 

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.