Contributed by Cheryl Bailey
I love to cook. I cannot remember when I was not at home in the kitchen. One of my first skills to master was the art of separating an egg. I needed to learn this trick for making meringue topping on cream pies my family ate after Sunday dinner. If you have ever made meringue, you know that the least bit of egg yoke in the whites can ruin your dessert before you ever get it started. This is why it is important to master separating an egg.
Life with my disabled son John is a lot like separating an egg. On the outside, when you look at John, you see a whole person, but just under the surface, are two parts, the person and the disability. Early on in his life, I saw John more as a scrambled egg; I was unable to see the child for the disability. As time went on, John began to respond to us and I wanted to get to know my son, I knew I had to stop looking at the disability so much, and focus on the child. To do this, I had to learn how to separate the two distinctive parts and put both in a different area of life.
When I first began to practice separating eggs, I made a lot of mistakes. I dropped globs of yellow yoke into the egg whites and tried to dig it back out with a spoon. I bought an egg separator and had some success, but quickly learned larger eggs often broke in the separator and flowed into the cup as one drippy mess. I used my hands that well known bakers trick of just letting the egg white flow between your fingers, holding the yoke in your hand.
From the first day of evaluation and a request to get John help, I felt pushed to be able to explain and answer questions about my son in two groups, that is his disability, that is personality. Friends, family and even therapist never stopped asking which was which, and that, made my situation harder. I felt pushed to have an answer every single time I was asked about an action or sound coming from John.
Learning to separate John from his disability was just about as tricky as mastering separating an egg. I made a lot of mistakes. I confused his strong willed personality for the routine of autism. I excused his plowing walk that dominated a room, with cerebral palsy. I made excuses for his behavior when we were with family or friends, even if I knew his actions where more normal child misbehaving than not. I desired perfect egg whites to make meringue, and I desired a perfect separation of ability from disability in order to understand and know my son as well as answer questions about him.
Life is an amazing teacher. Somewhere over the years, as John’s disabilities mellowed, changed, and evolved so too, did my ability to see the person and personality in John. We learned a touch system of communication, a way for my non-verbal son to tell us his likes and dislikes, his wishes and needs. I long to have deep soul searching conversations with him, but settle for simple yes and no answers to my questions. I wish he would use PECs for communication, but I understand his personality and personal desire to speak means PEC’s is an insult to him. He has been smitten with the idea of using sign language after watching the show, “Switched at Birth”. Suddenly using sign was cool, and did not make him odd or stand out. Sadly, his weak hands make signing almost impossible, so we modified signs for him. Now we get the best of both worlds, a few words fluttered to us when he communicates, and for John, pride in communicating in a means he sees as more normal than PECs. Nice to please that strong willed personality in my grown son.
I know now that try as I might; separating disability from John just isn’t possible. Just as ability shapes him, he is also shaped by the things he cannot do. One thing is for sure, John is indeed a good egg, and we tell him so often. That’s okay, we don’t have to tell him, if you know John, his conceded nature, strong belief in himself, means he not only knows this he takes pride in making sure everyone around him knows as well.
Know my son’s disabilities; yes I know them all very well. I just choose not to focus on them or make them important. Best of all, I know my son, I know his abilities, I know his personality and that outshines everything else. I guess you could say, John and I choose to see life…sunny side up.
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