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Erasing The Lines That Limit Our Children

By Rick and Cheryl Linson - Spring 1996

    Just before Thanksgiving of this year, the 18 year old, visually impaired son of our friends, was hit by a mini-van while crossing a busy street near out home.

In that same week, the US Congress and the President agreed to allow individual states to establish speed limits within their own borders.

At the same time, our visually impaired 6 year old is learning the

rudimentary skills of getting around independently with instruction by his new Orientation and Mobility instructor.

All of these items are examples of releasing the limits. The horrifying fear that hit both of us was the idea that our son could be crossing the street and get struck by a car or worse. (By the way, the young man mentioned above was critically injured, but is recovering.)

Aaron is our visually impaired son. He was born on August 14th, 19989 at 24 weeks gestation weighing one pound and six ounces, a micropremie. Like most children born this early, Aaron developed a condition known as Retinopathy or Prematurity ROP.

This condition is marked by an overgrowth of blood vessels in the eyes which can lead to detached retinas. Cryotherapy, a freezing technique, of the blood vessels is the solution to halt the overgrowth, however this solution —as opposed to total blindness from detached retinas — damaged one of Aaron's eyes beyond function and left the other eye with functional vision only. Even so, Aaron is an extremely independent and self-motivated child. He insists on doing things for himself and works diligently to master a complicated task. He truly intends to push beyond his visual limitations.

As parents we are often tempted to control our child's environment to the utmost, so as to prevent harm or injury from reaching him, while teaching him the importance of being aware of what is happening around him. This parental protectiveness seems heightened when our child is handicapped in some way.

Our son, Aaron, has at many times come right up to a tree, post or person and either swerves away at the last minute or runs into the object. In these moments we think that there must be some we can prevent this from happening again. So, should we as parents take protective actions? How far should we go? Do we prevent them from ever crossing the street by themselves? Do we keep them in the house instead of allowing them to play outside? Where do we draw the line? The federal government has erased the line that has controlled our speed limits for years. Should we erase the lines that limit our children?

Whenever we ponder these questions, we are reminded of two blind individuals that we met one summer about eight years ago.

The first man was in his mid-thirties. He was totally blind. He was a college English professor at Buffalo State college in Buffalo, NY. He had to read and grade hundreds of term and research papers every year.

The second man was in his early twenties. He was legally blind, meaning he had functional vision, but on the whole was not able to see really well. He lived at home with his parents, whom we learned were preventing him from leaving. He desired to be out on his own, yet his parents weren't willing to release him into the world.

Both men were horseback riders and their riding styles were very different. The college professor mounted on a large horse, securely grabbed the reins and rode with fervor and gusto. We watched with amazement as this totally blind man would manipulate the reins to steer and confidently control the horse. He would jab firmly in the horses ribs with his heels and knees to get a response. He placed no fear in his ability to control the animal, but rode as if he were an accomplished rider with decades of experience. The other man, the one living at home, went through the paces of his riding class, his hands loosely holding the reins, allowing the horse to go through the routine it had learned from many other classes. This younger man enjoyed himself and knew that he had done something he had liked, yet he never mastered his environment, that is, he never really took control over the horse. One man could say he rode a horse that day, the other could only say he had a horse back ride.

The differences between these two men constantly challenges us with our son. We all need to find that equilibrium for our children which provides the greatest challenges and stimulations, and instills the utmost confidence while sheltering them from real harm or death. Maybe we shouldn't ask ourselves, "Where will we set the limits?" as much as we should ask, "How far will we release the limits?" As parents, we wrestle over these questions with all of our children, but human nature seems to drive us to reserve an extra amount of protectiveness for our differently-abled children.

One day, not too far off, Aaron will be crossing streets, even busy intersections, on his own — and we will let him. We will give Aaron every opportunity to pursue his dreams and goals, whatever they may be. Releasing the limits means that we will sometimes need to assist our children in finding an alternative method to obtain their goals. For instance, to learn to cross a busy intersection, Aaron will need to learn orientation and mobility skills, how to use a cane, and perhaps other techniques.

It seems natural to release control and increase responsibility with our non-handicapped children. Yet with our handicapped children it seems unnatural, especially after we have spent so much of our personal time defending their rights, caring for them through long hospitalizations, or watching them struggle to perform like their peers and question themselves when they cannot.

As parents, we have an obligation not to restrict our children and to allow them to do things for themselves whenever they can. This will vary with each child and handicap. A mute child could not sing a song with clear words, yet he could release his musical ability through musical instruments. A child with Cerebral Palsy may never learn to walk, but a wheelchair can provide him with sufficient mobility.

Our current challenge is music. Aaron can see and play musical instruments, but cannot see and distinguish written music. Yet his desire for music compels us to pursue alternatives to help him accomplish his goals.

In order to truly release the limits on all our children, we need to transition from preventing to empowering. This is perhaps the hardest thing to do — suppress our internal parental instincts and exhibit parental support and encouragement.

So what now? We all agree we need to let go a little more. How do we spot when we are being overly restrictive? Here are several possible sources:

1. Ask a close friend. They are a great source of information about how restrictive we are being, especially if they don't have a handicapped child. One word of caution: we shouldn't let our feelings be hurt if they tell it to us straight. Remember, we asked!

2. Ask our child's therapists or doctors. It has never ceased to amaze us to hear one of Aaron's therapists tell us about something he did that we thought he couldn't do. Doctors and therapists will often push a child to their absolute limits in order to accurately gauge their abilities and limitations.

3. Ask our child. We often just do things for our children without asking them to do it or finding out that they can do it.

4. Challenge our child ourselves. We find that we are so proficient that we would rather do things ourselves than allowing our child to "work out" the solution himself. The extra minute used to allow him to do for himself is worth the independence that is being gained.

5. Allow others to expect more from our child. People may provide unexpected challenges for handicapped children. In an effort to impress these people, our children will perform beyond our own well-meaning limits. We tend to be quick to step in and "cover" for our child. Give them a chance to try first. These spontaneous challenges will result in some successes and some failures, but the experience will produce confidence in the child.

6. Talk to others who grew up with the same handicaps. These people are usually very willing to talk to parents of handicapped children. If their handicap leaves them without speech, a parent or caretaker is often willing to share their experiences.

7. Try alternative methods of doing things. Try many different teaching techniques before labeling a task as impossible: hand-over-hand, recitation, repetition, worksheets, textures, movement, etc. Different forms of learning expand their horizons.

    Finally, let's not forget the exhortations and examples that we receive from our Heavenly Father. Proverbs 3:5 instructs us to "lean not on our own understanding." We should look to God and His words to assist us in parenting.

    God allows us to be tempted, but 1 Corinthians 10:12 says that the temptation will not be greater than we can bear. This verse stirs up an image of God watching over us during a period of trial and stepping in at the moment when he determines we are beyond our ability. We should do the same with our own children.

    God's word also tells us in Proverbs 22:6 to "train a child in the way he should go." As parents of handicapped children, we apply this verse in the physical realm as well as the spiritual realm. Often the abilities our children will have depend on our instructions and demonstration that they can accomplish much more than they think. How do Olympic champions obtain perfection in their sport? Someone has told them that they could reach the highest goal with their own determination. As Christians we need to allow God to work in our children to give them the strength they need.

    In conclusion, as parents who are deeply concerned about our handicapped children, their education, and their future, we are challenged to give our children the greatest opportunities to succeed without limiting their goals unnecessarily. We must overcome our trepidation about our child's abilities and encourage them to strive beyond false limits to achieve their goals. We should look toward each other, medical professionals, our children, and our God to provide us with guidance in establishing or releasing limitations on our handicapped children. Most of all, we must not confuse our love of our children with our fear for their safety. Then we will produce competent, confident, and accomplished children.