Often, students with special needs have trouble communicating how they’re feeling or if they have a problem that is affecting their ability to learn. This may often lead to behavior problems with those students.
I recently had an experience that reminded me how important it is to pay attention to what students are trying to tell us, to believe them when they do communicate with us verbally and non-verbally, and to do our utmost to find a solution to the problem that is preventing them from getting the most out of their learning or negatively impacting their quality of life.
As some of you know, I have a sister, Violet, with special needs who has difficulty communicating. Almost four years ago, she had a bad fall when dancing with characters at Six Flags. It resulted in a trip to the emergency room and stitches on her face. See, she face-plants because she doesn’t have the instinct to put her hands in front of her when she falls. A year later, she fell again. Soon afterward, she began to have trouble walking on her own. She’d either freeze or hang onto anyone near her before she’d take a step.
She appeared to act out for attention. When she wanted something she saw straight in front of her, she had no problem walking or running. She was fine walking in familiar surroundings. Other times, she would sit down and refuse to stand up or demand that someone hold her hand. When this happened, I could see that she was terrified, yet I struggled to understand what was going on. She is prone to drama; could she be manipulating us? Some of her caretakers felt that she was acting out for attention and that nothing was really wrong.
Because my sister could not fully explain what she was feeling or seeing, it was hard to tell if something was truly wrong. But, I did not agree that she was simply acting out. Possibly, there was a combination of things going on. I took her to different doctors, who checked for a myriad of issues and possible causes, but nothing, not even physical therapy, reduced her increasing fear of falling or walking.
Now, my sister also has a condition called amblyopia, which most people know as lazy eye. She’s had it her entire life, with no apparent problems, so it wasn’t something I or the doctors considered as new, or a possible cause to this debilitating phobia.
I was at a loss and prayed for help solving this puzzle. I could see the stress it was causing Violet and her care providers. Honestly, it was beyond upsetting to me to see her struggle and limit her activity.
Then, while presenting a program for paraprofessionals, I was given an incredible gift: A paraprofessional attending my program had an eye like my sister’s. I wondered how I could possibly approach her to ask so many questions that might help me understand. I’m grateful that the opportunity presented itself and upon asking for her help, she kindly agreed to talk to me. As soon as I described to her what my sister was doing, this educator said, “It’s her vision.”
She told me that amblyopia can worsen as people get older. That she herself had a very difficult time walking on certain surfaces – such as ramps or stairs that slope downward, or flooring that changes patterns. “Sometimes, I have to close my eye in order to keep my balance,” she told me, adding that the visual distortion can be terrifying. However, when objects are directly in her line of sight, she has no problem walking to them.
This matched up exactly with the way my sister was behaving! Of course, she couldn’t see correctly! Of course, the ramp down to the parking lot was terrifying for her!
With this information, I was able to connect my own personal and professional experience with vision disorders and how to find help. It was not the first time I found help at the Optometric Extension Program Foundation, www.oep.org. I located a specialist in my sister’s area and made an appointment.
After five hours of the most thorough testing I’ve ever witnessed from an eye doctor, Dr. Ruggiero entered the room and explained, “Your sister constantly sees everything double! Her eyes don’t work together at all! She is afraid because our eyes tell us where we are in space. She can’t see where she is in space.” Where she was able to compensate for this when she was younger, as she aged, her vision issues increased.
The good news is that there’s a treatment that will help her. Glasses with prisms, which also help with dyslexia, and vision therapy that may help. Vision therapy is most effective with young children; however, there is a possibility it may help adults, too.
I’m incredibly grateful to the beautiful soul who attended my presentation for sharing her experience with me. She gave me the missing piece to the puzzle so that we could get help for my sister.
And there was another gift. My experience with my sister reinforced something even more important: how critical it is that we listen to our students who can’t communicate clearly what is wrong. Look beyond what seems obvious, because we could be so horribly wrong in our assumptions. These wrong assumptions could hinder their learning, limit their opportunities for growth, and negatively impact their quality of life.
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