I began sharing the unique story of my daughter Madison two years ago now. As you should know by now, Madison has a very rare neurological disease called Rett Syndrome. This has left her with many deficiencies, but I feel none worse than her lack of communication.
Unless you’ve met Madison or someone with similar physical challenges - such as having no way to communicate, you probably won’t understand the full extent of how parents in these situations feel inadequate and powerless. To be honest, I wonder how much this detail about Madison has even sunk in as you read my stories about her.
She can’t talk. Not a word.
She can laugh however, which I cherish and try to never take for granted. She can also cry, which I will literally and instantly drop anything and everything for and leap through fire to get to her when this occurs, because we have only heard her cry a handful of times and when she does, it’s like a 9-1-1 alarm.
She makes two types of sounds: A happy and content “coo”, and an agitated, distressed vocalization.
On top of this all, she has severe apraxia, which prevents us from teaching her sign language.
So what am I left with? For over a year now, I’ve been desperately searching for solutions. For ideas. She has more technology surrounding her than a millennial start up company has. We have the manual on Augmentative and Alternative Communication (AAC); but while it’s fun to play games with her using eye gaze, there is no guarantee she will respond to it in a useful and practical way or form of communication.
The last option we tried was the use of a switch - a long shot due to her apraxia and lack of functional use in her hands. All she does all day is wring them - a key trademark of her disease. However, recently I've seen an exciting breakthrough with the switch.
When we pair it with what motivates her the most, she is learning how this basic cause and effect tool is helping her get what she wants. Today the one switch she uses starts her tablet after a timer pauses her Peppa Pig show every ten seconds, but tomorrow she may be able to hit a switch that requests a certain food or activity or even communicates an emotion she is feeling.
This is a huge breakthrough for us. A small way in which Madison is learning to take control of a situation and manipulate it how she wants. I’m finally hopeful that there may be a chance that we can mold this into something that will bring incredible value to not only my life, but also to Madison herself!
It’s the second worst feeling in the world; the helpless, inadequate feeling of not being able to understand or help your child with their most basic needs and necessities in life because you can’t understand them.
The worst feeling in the world must be what Madison lives with every single day of her life where she is trapped inside her own body, with no way of communicating any of her thoughts, feelings or desires. I can’t imagine how horrible that must be. And yet she continues to try with a smile on her face.
Maybe… just maybe, this switch will be one small step in the life long journey of developing some way of communicating with Madison and unlocking some of what she’s got bottled up inside.
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