By Gwen and Jim Botting. This article originally appeared in Family Connections. Used with permission of Michigan Parents of Visually Impaired and the Bottings.
As parents of a child with retinopathy of prematurity, we were very concerned about our son’s eye pressing behavior. This was a particular problem after the numerous surgeries that were required to remove scar tissue, and as he was under a year old, simply correcting him verbally wasn’t going to work. I can now say that Greg, who is 9, rarely presses. Several people have asked me how we got him to stop. While we can’t say he is totally “cured”, here is what we did. Maybe some of our ideas can help you.
Eye-pressing is one of several behaviors among blind persons which are either physically damaging or socially inappropriate or both. These behaviors are repetitive motions called “blindisms” and also include rocking, hand shaking (as if trying to shake off water), jumping or galloping in place, and repetitive head motions, and can be very difficult habits to break. I have asked a number of blind people about these behaviors. Most blind people who have problems with blindisms cannot tell you why they do it, and often don’t know that they are doing it. There must be some level of comfort involved, since these behaviors seem to surface most often in times of stress or boredom. With eye-pressing, most of the teachers and blind adults that I have talked with believe that the child craves visual input, and that eye-pressing may produce some small amount of feedback to the visually-starved brain.
Eye-pressing is sometimes overlooked, as your child may appear to be rubbing their eyes or just “resting” their face in their hands. Sometimes people are so tied up emotionally about the child’s lack of vision that they accept this behavior, but there are serious consequences to consider. Kids develop ingenious ways to press their eyes. Fingers, palms, arms and even knees can be used, and in ways that would cause considerable discomfort to a person whose eyes function normally. I have seen children and adults poke their fingers into their eye sockets past the first knuckle, and this can cause physical damage to the eye and facial disfigurement. It is this potential for damage that makes eye-pressing one of the worst blindisms and the most important, in my opinion, to prevent and correct.
As it was with Greg and a number of other children we know, the ones who press their eyes often seem to be the ones with a small amount of light perception, and may have had a number of surgeries to protect what vision they have. Eye-pressing can cause hemorrhaging (bleeding) inside the eye due to the pressure on very fragile blood vessels, risking what little vision the child still has, and artificially creating or aggravating a glaucoma-like environment inside the eye. Sometimes the child presses only one eye, sometimes both. We have seen that people who press often, in ways that would be painful to most people with vision, can cause the eye to recede in the socket, sometimes producing dark shadows around the eyes and causing the face to be distorted and unattractive.
We started trying to break Greg of this habit when he was still a baby. If you have a baby who has not yet started this habit, prevention is possible. According to Lilli Nielsen, a child development expert with a special interest in blind children, children start these behaviors out of boredom. Give him or her lots of exploration opportunity to keep those little hands and little brain busy, especially when driving, when you can’t keep an eye on him. After hearing a presentation by Dr. Nielsen and seeing a demonstration of her “Little Room”, I adapted the idea and made a vest for Gregory with all sorts of odd stuff attached to it, like a giant (unopenable) safety pin with sewing bobbins on it, geometric shapes made of fabrics of different textures like gauze, corduroy, waistband stabilizer, interfacing, and lace, buttons of every size, shape, and material (securely attached) and several loops of grosgrain ribbon fastened with snaps, so that some objects could be moved from place to place and new ones added periodically. The idea was to give him something interesting to do that wouldn’t “get away” from him and that wouldn’t require 100% of my attention.
Breaking the Habit in a Toddler
We weren’t quick enough to realize that Greg was pressing until the habit was fairly firmly established. I was amazed that, even with all the surgery Greg’s doctors had performed, they really didn’t have a good way to help prevent him from putting his hands in his eyes, which was especially critical after surgery. “No No’s”, a hard plastic sheath secured by hook and loop tape that fits over the baby’s elbow and available by prescription, worked for a little while, but soon he was strong enough to break the hook and loop tape open, and No No’s restricted his exploration of the world more than we liked. We knew that trying to reason with a toddler and even using behavior modification techniques were either not going to work or be hopelessly slow, so we had to be smarter than he was. To some people this may seem draconian, but we were committed to keeping Greg’s eyes as healthy as possible. We ordered a helmet designed for kids with seizure disorders which was custom made to our specifications with a plastic shield over the face. It took six months to get it and it didn’t fit. In the meantime, I was going crazy and Greg was having repetitive eye bleeds partly from running into stuff as he learned to walk and possibly from the eyepressing. He was also losing contact lenses every two weeks, and that was expensive!
So we hit on the idea of sports goggles. We couldn’t find any child-size racquetball goggles, but we used adult sized ones anyway (they cost only about $15). Of course, if left the way they come out of the package, he’d flip them off in an instant. So I used webbing like that found on bike helmets and made a chin strap and a T for over his head, both of which attached to the strap on the goggles. When his nose got sore I fitted the nosepiece of the goggles with moleskin. When he figured out how to get his hands under that, I added the bike helmet over the goggles. It worked. When we finally gave up on the contact lenses, we ordered sports goggles with prescription lenses and used the same webbing system and the bike helmet. As he was less and less prone to eyepressing, we went with just the goggles. At night we used the “No Nos”, and made sure that we went to get him as soon as he woke up, giving him little time by himself. We stuck with this until he was 5.
When a Greg was old enough to understand consequences of behavior, we used positive or negative reinforcement just like we did for other kinds of behavior we wanted to change, offering incentives or restricting privileges as appropriate. The important thing to remember is that your child doesn’t (usually) realize he’s doing it, so constant verbal reminders are necessary. Many parents use a code word. “Hands down” is really obvious, but other words like “bingo” or “lookin’ good” or just the child’s name might work. The trick is to remind him or her, consistently, without relenting. You will be sick of it, and your child will be sick of it, but it will be worth it. It may take years, but eventually (we hope), the eyepressing will be a rare enough occurrance that you may just be able to express your shock and dismay at the behavior and get the proper response.
Sometimes parents try to physically move the child’s arm away from their face. We’ve found that the child usually resents this and will resist. A light touch on the arm, however, as a reminder, might be more effective and less offensive, especially at times when you don’t want to attract others’ attention.
If your child needs something to remind him not to press, something as simple as the little plastic side shields that fit over the bows of their glasses, such as are used for eye protection in industry, may help. This may even help a teenager who finally understands the need to break the habit, but needs something to remind her not to do it. The shields are quite unobtrusive and may even be “cool” among their peers.
It’s very important that all adults that work with your child understand that this behavior is unacceptable and how you want them to deal with it. Often the “other” adults have more impact than you, the parent. Greg was hardly ever “caught in the act” at school, but as soon as he came home and there wasn’t constant activity, his hands would be in his eyes again.
When a child is in elementary school it’s much harder in some ways to change this habit, but you can explain that sighted friends will think his habit is sickening and won’t want to be around him. This is hard for a blind child to understand, since they have never been “sickened” by the sight of anything; however, you can put it in terms of particularly bad smells and it may make more sense.
By middle school and high school social pressures may be best tool, but we end up using them for so much, like eating and dressing skills, that it may be difficult for these concepts to retain their potency. Getting a job and the freedom that money gives may be a motivational factor, as employers are not likely to understand this odd habit. By this time, the eyepressing has probably caused some facial disfigurement also, which is hard for the sighted public to accept.
Early Intervention is Best
The sooner the habit is broken the better, and the less physical consequences there will be. My message here is: don’t give up. Find a way to work with your child and make sure he or she understands that it is in her best interest to quit, for good. We haven’t totally won the battle (after all, Greg’s only 9 years old), but we only catch him at it once every six months, instead of 85 times a day!