Future Reflections Winter/Spring 2006

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Open the Door! (Please)

by Alexandra Daley

Editor’s Note: I have known Alexandra (Alex) Daley, Nikos (her son who is blind), and the rest of their large, loving, and deeply faithful Catholic family for almost fifteen years. The story that Alex tells below is one of my favorite “tough love” parent stories. It demonstrates true parent power. Elsewhere in this issue her son, Nikos, also talks about his mom’s influence in his life. I think you will enjoy and find inspiration in both of their stories. Here is Alex:

My son, Nikos Daley was adopted into our family when he was four-and-half years of age. He is totally blind and has a hearing impairment that requires him to wear hearing aides in both ears. He is the youngest of our nine children.

We became involved with the National Federation of the Blind shortly after he arrived. I can’t tell you how invaluable this organization has become to us over the past fourteen years.

It’s amazing to me to look back now and see how God worked in my life as one stage prepared me for the next. Back in the late sixties, after college graduation, I worked as a teacher at a home for crippled children. When I first entered this institution, I was overwhelmed by the severe medical and emotional problems that most of the children experienced. But, after a while I began to see these children just as children struggling to learn like any others. But one thing that stood out to me was how obnoxiously demanding the children could be. Granted, they needed the help but it was how they asked for it that struck me. For example, one day a particularly bratty child who was in a wheel chair wanted someone inside the room to open the door to the classroom as he sat in his chair out in the hall. He kept banging his chair up against the door and screaming “Open the *#!*#!* *#!*#!* door.”

I opened the door from inside the classroom to see who was screaming. When he saw me he continued screaming. I looked at him, leaned down, and in a very soft voice said, “When you ask in a polite way for someone to please open the door, I will be more than happy to do so.” I then closed the door and went back into the classroom. He screamed for quite a while, repeating his original obscenities. But after a time, all became quiet. Eventually I heard this small voice politely ask, “Please open the door.” Without any fanfare, I immediately obliged him.

This encounter left a lasting impression on me over all these years. Many children with disabilities grow up to be obnoxious adults because they are overindulged when they are little. I don’t think that the parents who do the coddling realize that someday they (the parents) aren’t going to be around and the world will not be so indulging. We, as parents, need to look at the big picture, not just what is going on in the present. We need to allow our children to do as much as they are capable of doing (and that is usually a lot more than we think). They need to have responsibilities in the family just like their siblings.

We don’t change the rules for our blind children, we adapt them. Some of Nikos’ jobs included emptying the dishwasher, using the small vacuum on the steps, empting the trash, scrubbing the bathroom, doing laundry, and folding the clothes.

When he was five-years-old he was somewhat reluctant to use his cane. It was much easier to go sighted guide. We were going to a doctor’s appointment the day that I made up my mind that he needed to use his cane and not hang onto my arm; I would verbally help him along, but not physically guide him. I’ll never forget the look on his face when he bumped into the big silver ashtray and large potted plant that was right next to the elevator. I think he was looking for a little sympathy because of this difficult endeavor that he had just survived. My comment to him was that he was fine, that he was doing a great job by himself, and wasn’t it amazing that now he knew that many times potted plants or ashtrays are situated close to elevators. All those times that we had gone to this doctor, he had never “seen” these items before. How many more things was he not “seeing” because he was going sighted guide all the time? That day was a turning point.

Nikos graduated this past spring from Loyola Blakefield High School in Towson, Maryland. This past summer he went to New Jersey to the Seeing Eye School and trained for five weeks to get a Seeing Eye dog. Let me share with you the insights I obtained through this process.

Confidence and independence are two important characteristics that we strived to instill in Nikos since the day he came to us. He participated in most all of the activities offered by the local and state affiliates of the NFB as well as Blind Industries and Services of Maryland (BISM). And, of course, he had an orientation and mobility instructor from the school. We were feeling pretty good about Nikos’ progress until we got a letter from the dog school letting us know that someone from the school was coming to evaluate his mobility skills. Nikos would have to demonstrate his capacity to travel independently--alone--on specific types of routes. This is something they do because the blind applicant has to have the orientation skills to be able to direct the dog. The blind guide needs to be in command so that the dog understands what is required of it. You don’t just say “Take me to Rite Aid.” You need to tell the dog right, left, forward, etc. so the dog knows which way you want him to go.

All of a sudden reality hit: Nikos walked all over the place, but he was always with someone--never did he go all by himself. He was eighteen-years-old and was not able to go to any store totally by himself, even though we had two shopping centers only about one mile from our home. If Nikos wanted to get a hair-cut, he waited until it was convenient for someone else to take him. If he needed something from any store, he was at the mercy of someone else.

Throughout all these years, I never realized that I should have been working on letting him go on his own; even though he had the training and the basic skills that he needed to do so. I was in shock. So, I told Nikos we were now in Boot Camp; every day he was going to work on getting to both shopping centers (located in opposite directions from our house) and to church (which is within walking distance, too). And on Sunday mornings, he could get to Mass on his own.

Well, our work began and Nikos was faithful in going out every day with his cane to practice his orientation and mobility skills. I can tell you about the look of satisfaction and confidence on his face when he accomplished this all on his own. I can also tell you that I almost had heart failure in the process.

But all this work paid off. Nikos was accepted into the guide dog program and he now has Burgess, his Seeing Eye dog, whom he is totally in love with. Because of his hearing loss, he hated to take his hearing aids out when he went to bed. He said the deafening silence along with blindness was very creepy to him. Now that he has Burgess, he doesn’t feel that way any more. He knows Burgess will alert him if there is something wrong.

It certainly was difficult getting to this point, but the independence that Nikos gained and the confidence that he could truly safely travel on his own--first with the cane, and now with his dog--was priceless.

Nikos, with Burgess at his side, is now a college student at Franciscan University in Steubenville, Ohio. Life is exciting for both of them--and also for this one proud mom.

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