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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

The right fit…

I have written before about how Matthew has used videos to learn sign. He enjoys many other learning videos, 60 or more, with which we us to interact with him. We have what most of you may have at home in a DVD player that is attached to a television. Matthew has learned to operate on his own after we insert the DVD he has requested.

What has become our nearly 6 year challenge is to find the appropriate portable DVD player. Currently we are on number 10 in the portable DVD category. You see, Matthew is not the most gentle with his most prized possession. He has not fully comprehended that when he is done with a session of viewing DVD’s the player does not need to go down the stairs to be turned off. Also, the term “portable” to him may mean something different to us. His definition of portable includes dragging it from room to room by the charging cord.
 

Draining water out of a DVD player after recovering it from the bottom of the pool

I have searched the entire market looking for the perfect rugged, portable DVD player. Folks, there are none out there. The only one that I found that referred to the construction as rugged only had rubber corners on it. The only thing rugged about it was that the rubber corners made it a very expensive, soothing sensory input chew toy for Matthew. We needed a DVD player that would stand up to the following…all of which either did a DVD player in, or aided in ending the life span of it; a fall down two flights of stairs (repeatedly), drool, the bottom of the deep end of a hotel pool, closed in a car door, repeated banging on the screen, no buttons that stick up and can be picked at or chewed on, etc.

Matthew enjoying a movie on his DVD Box

My search came to an end when we took an alternative approach to the DVD player problem. I made my own. Well, not really my own DVD player…I made a case that would take the above mentioned abuse. It is not perfect, but the current DVD player has lasted nearly two years now. I took a creative approach in using a PELICAN case…a case that the military, photographers, Emergency Medical workers or anyone else who needs to protect sensitive equipment may use. I had to make my own modifications like cutting a square out of the lid and replacing it with 1/4″ plexiglass, drilling holes in the plexiglass to hear the sound and an access hole to allow the charger to be used when it is closed. We also had to find the right DVD player, one that folds flat while open and had a remote with the “eye” on the front. What we have now is a nearly indestructible case that we can control with a remote and has storage inside for the player, his DVD’s, the remote, the charger cable and for good measure, a back-up battery. One great feature is that it has a great carrying handle and Matthew is not strong enough to open the latches.

Now, I share this story about DVD players and cases with the intention of making a point…Do not always look at the traditional way or the most popular way of doing things. There is not always a one-size-fits-all approach, the perfect product or system out there.

We have all been created with a unique purpose and gift sets. It is our quest to find out what that purpose and gifts are. I take a look at my own life and realize that if I had seen it scripted out I would have thrown it back to the author and demanded a re-write. It would have made no sense. But, somehow the combined experiences have uniquely equipped me for what I am doing at this season of my life.

“Change is the end result of all true learning. Change involves three things: First, a dissatisfaction with self…a felt void or need; second, a decision to change to fill the void or need; and third, a conscious dedication to the process of growth and change…the willful act of making the change, doing something.”  Leo Buscaglia

Change isn’t always forever though…just in the last few weeks Matthew has breached the security of the DVD case. He has managed to break the 1/4″ plexiglass. Looks like another trip to the hardware store for me.

1 Comment

  1. Lisa

    Great idea Kevin – I love when we come up with solutions outside the box. My husband would LOVE this! Hope you get the Plexiglass fixed soon…

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