VOICES FROM THE EDGE: THE END OF THE GIANT ROBOT

I knew it had to happen. For 18 months, the "robot" creature in the backyard had  grown to gigantic proportions. While it could be hidden inside a tent or a tarp, I didn't mind so much. It was Allen's project and it kept him occupied. But when the thing outgrew its tent, I knew we were in for trouble.

To no one but Allen would the jumble of aluminum cans, metal pieces, wooden pallets, and wheels resemble a robot. I saw a pile of junk; he saw a creation that would one day move and function. Anytime I was tempted to complain, I reminded myself of just what the project meant to Allen.

 The odd collection of parts began in April of 2015, shortly after Ron was hospitalized--again--with clinical depression and resulting heart issues. Coincidentally, Allen had just been diagnosed with Asperger's syndrome and while he'd always had learning challenges and difficulties with social situations, the label hit him hard. He was going through job training with Occupational Vocational Rehabilitation and wasn't permitted to have a job. And my kids, all of them, like to work. Allen had time on his hands. I did not. With Ron in the hospital for six weeks and me working multiple jobs, Allen was left to his own devices.

Enter the Robot Plan. Allen made sketches and plans, mentally constructing it in his mind. Then he began to collect the pieces. He saved aluminum cans and cut them apart, bending them into a covering for the robot. He scavenged sides of the roads for metal and wheels and thrown away parts. Each piece meant something to him. He was excited when a pair of baby buggy wheels were found, ecstatic when a large trashcan became available. 

According to SAMHSA (2016), adults on the autism spectrum disorder tend to be introverted and often look for ways to self-medicate in order to avoid a sense of anxiety and stress. While genetics play a part in ASD, a chemical imbalance in the brain contributes to developmental delays and problems with thought-processing and neural stimulation. 7.9 million Americans with a mental disorder self-medicate with drugs or alcohol.

I did not want Allen to be one of them. So while he went for job-training and dealt with physical and mental testing requirements, he built his robot. I bought a bigger tent.

Two weeks ago, the robot was ready for testing. It was a "weight test" only, Allen explained to me. With no moving parts--save the buggy wheels--the robot was not a working model. But when he was able to make it stand on its own and pass a "rock test", he declared it a success.

My neighbors declared it a disaster. I didn't really blame them.

Last week, various parts of the "robot" were taken down and delivered to a storage unit Allen rented. On Sunday, a rented truck from Home Depot carted the rest of the remains away. I wasn't sad to get my backyard back, but I was glad that while Allen adjusted to so many changes in his life and found new ways to learn and relate to society, he had the robot to keep him from back street drug deals and bars. 

A rather irate neighbor asked me why I had allowed such a "monstrosity" in my yard. I started to explain, then wisely shut my mouth. Later on, though, it occurred to me that if I had a blind child, or a child with a physical disability, no one would have complained about a ramp or a "blind child" sign. Allen's disability is invisible and sometimes comes across as cockiness. Nonetheless, it is a disability recognized by the ADA. For Allen, the robot--ugly as it was--was therapy.

Allen assures me that he learned a lot from building the robot, but that future endeavors will be confined to his corner of the basement. As his mother, I can see that while the robot may have been a temporary eyesore for my neighbors, it helped Allen regain some control of his life. In fact, as he took apart the last of it and tossed it into the truck on Sunday, he declared, "I think I've learned a lot about responsibility from this."

Perhaps I was wrong to let the project take over the backyard. There is no rule book that comes along with the diagnosis of ASD. I make this up as I go along. And Allen, God bless him, continues to  help me learn.

KERATOCONUS: SEEING DOUBLE

As soon as we got home from Wills'  Eye Hospital, my mother headed for the bookcase in the living room.  She took down the "K" volume of the 1967 World Book Encyclopedia and began to furiously thumb through the volume, muttering to herself, "K..e." She wasn't really sure how to spell the word the ophthalmologist had just told us and we'd been given no literature or handouts. Frustrated, she plopped down the "K" volume and took out the "E". For eye. There she found a cross diagram of an eyeball with the cornea clearly marked, but no explanations of Keratoconus. Finally, she reached for my father's high school Webster's Dictionary. There it was:

Keratoconus: An inflammation of the cornea. Sometimes caused by excessive eye rubbing. 

"Okay," she said. "It's just an inflammation. It will go away." She turned and pointed a finger at me. "Stop rubbing your eyes."

When my father came home from work and asked how our visit to Will's had gone, my mother showed him the dictionary. "Ah," he said. "It'll go away."

But it didn't.  And it doesn't. While there are links between Keratoconus and eye-rubbing, and Kertoconus and allergies, and Keratoconus and heredity, the truth is that no one really knows. After the initial diagnosis the year I turned 19, I spent months being fitted for rigid contact lenses. Since my corneas were misshapen, finding a fit that was at least bearable was difficult. Finding ones that were both passably comfortable and provided better vision was almost impossible. And since my corneas continued their propensity to grow into cones and points, the lenses needed to be changed often. I left Millersville State Teachers' College after my freshman year and transferred to West  Chester University to be nearer to the eye hospital. And for the next twenty years, through college and marriage and babies, I struggled to wear the contacts.

No one I knew had KC. No one had ever heard of KC. When I squinted or complained about my vision, friends told me to get glasses or stronger lenses. I tried to explain to them about double vision and hazes, about severe eye strain that affected me constantly. The inflammation my parents had thought would just go away did not. By the time I was in my late-thirties, the corneal dystrophy that had affected my right eye in particular had so mutated my cornea that a transplant became my only option.

While I was pretty much alone in dealing with KC, it is now considered to be the most common ailment  of the cornea, affecting about one in every 2,000 Americans. Usually patients have it in both eyes and are otherwise healthy. The disease progresses slowly and may accelerate during pregnancy or from allergies. Like many diseases, the effects of KC are wide-spread. Some people manage quite well with glasses and contacts. Others may need modern procedures such as cross-linking or piggyback lenses to correct the faulty vision. Research done by Tufts et al. (2012) indicates that a cornea transplant is needed about 21% of the time. I am currently awaiting my third.

One of the ongoing problems with KC is that it is often detected too late. A regular optometrist cannot make a definitive diagnosis. By the time the coning of the cornea is detected, it is too advanced for most minimally invasive procedures to be effective.  Many who have KC choose to simply "Suffer in silence", finding ways to deal with decreased vision. Those of us who  have Keratoconus are quite clever about finding ways to live a relatively normal existence. We often stop driving at night, limit our computer time, and avoid close work. 

By the time I was diagnosed at 19, the cornea of my right eye had already "coned." My options right now are limited. While my second transplant lasted almost 20 years, it has now "failed" and a new graft is needed. But despite the erratic vision that punctuates my life, I've found ways to cope with it. I've taught school for more than twenty years, earned both a graduate and post-graduate degree, and currently teach college. I've raised a family of three, cared for a disabled husband, and published three books. And while I now need to use a large monitor on my computer and I've long since given up needlepoint, I've refused to let it limit my life.

There are on-line groups for those who have KC. We share stories of stopping at a mailbox because we think it's a person, of mistaking a line of trees for a line of people, and of grabbing onto stair railings because steps look like sliding boards. We try to have a good sense of humor about it. Sometimes it's downright funny. I spent five minutes petting my son's cat one day, only to find out it was his jacket. I'd wondered why she was not moving.

This is World Keratoconus Awareness  Day. The first ever. Research is finally happening for KC and some new treatments are in the beginning stages. One day, perhaps we will fully understand what makes the cornea of some of us so misshaped. In the  meantime, let's try to be sensitive to those who are "differently sighted." 

And don't think we're crazy if we try to pet your jacket.