Optic Neuritis affects our children in different ways. They could see 20/20 one minute and the next 20/400. Fluctuating vision, severe eye pain, scotomos, fluctuating color vision loss, and migraines all affect how they see on a day to day basis.
Recently I have been introduced to Optic Neuritis, an inflammation of the optic nerve that can cause a varity of unpleasant visual discomfort and vision fluctuation as a result of Multiple Sclerosis.
Recently I had the opportunity to evaluate a young man with MS who had Optic Neuritis. Optic Neuritis doesn't follow the status quo of having consistent 20/70 or higher vision loss or a 20 degree or more field loss so the unspoken question in the all of our minds was, will he qualify for vision services and how should he be accommodated? I started doing research into Optic Neuritis and MS and was amazed at what I found and the misunderstandings that surround MS, in general. Then, just recently, while sitting in the Neurologist's Office while my son received an EEG, I picked up the Winter/Spring 2013 edition of The Motivator: Bringing Information to People with Multiple Sclerosis and Momentum: The magazine of the National Multiple Sclerosis Society, Spring 2013. Both periodicals had articles related to Optic Neuritis.
Let me share with you some of what I have discovered about this hidden disease and it's effects on our kids with visual impairments.
"He seems to see just fine." "I think he is just being lazy." "I've seen him read regular print. Why does he need accommodations?" These are just a few of the comments that I have heard as I do classroom observations on students with the "hidden disease" of Multiple Sclerosis. As a professional in the field of visual impairments, I don't just look at how the eyes work or don't work, I look at the whole child to see the effect of the visual impairment on the student's mental, academic, physical, and social life and how it interacts with other medical issues that may be present. The Motivator discussed five hidden areas that are often misunderstood in MS: fatigue, sleep issues, cognitive changes, and visual problems (p. 4).
The article pointed out that many times children and adults are characterized as lazy because of the extreme fatigue and overwhelming sense of tiredness. "Educating family, friends, and partners about MS fatigue is very important" (The Motivator, p. 13). When nerves are damaged, malfunctioning, or inflamed because the protective layer of myelin has been damaged, nerve impulses go off-track and create "nerve excitability" which causes sudden, sharp pain. This pain can be "lightening-like and intermittent, or it can be a burning, tingling, or tight, 'hug-like' feeling that can be continuous" (p. 6). Nociceptive pain is usually less intense but can last a long time. This type of pain comes from favoring the side that is not as affected or as weak. The body can become twisted and unbalanced. Lower back pain, muscle stiffness, and spasms can result. Another source of pain can be side effects of the medications it takes to manage MS.
Sleep issues and depression go hand-in-hand. One reason for the sleep deprivation, besides pain, is the frequent need to urinate throughout the night. "Many possible causes of sleep problems for people with MS can be identified, including: bladder problems, depression, spasticity and frequent leg movements, difficulty changing position in bed, and poor sleep hygiene" (p. 24).
Sleep deprivation can cause depression and depression can cause sleep issues. The common signs noted in The Motivator article were:
The Motivator gives this advice: "If you think you might be depressed, speak with your neurologist or primary-care doctor, or seek treatment from a mental-health provider. Exercise also helps depression, but is not a replacement for professional help" (p. 27).
Spasticity can be uncomfortable and painful, interfere with sleep, and cause the student to become rigid and tight.
The cognitive functioning areas that MS typically affects have been identified as the speed-of-information processing (our student's generally need more time anyway due to visual impairment), memory, and executive functions such as overseeing and coordinating day to day tasks such as organization, planning, sequencing, problem solving, judgment, reasoning, and self-monitoring behavior. OK, I also see a lot of VI related issues in this list. So, a child with MS struggles with these things in addition to the visual impairment...sounds like a double dose to me.
Now we come to the actual visual impairment, itself. Optic Neuritis is one of the first indicators that MS is the diagnosis for this disease. The physician can see that inflammation and demyelination has occurred along the optic nerve. Symptoms include:
It is rare that both eyes are affected; but it has happened. My student had both eyes affected and Julia Laureano, mentioned in The Momentum, had both eyes affected. Julia is legally blind and uses a dog guide for traveling. She has often been painfully misunderstood in her journey with the effects of MS and I kept thinking of my student as her story was revealed. Their paths were so similar and yet different.
What struck me about vision impairment in students with MS is the fact that it fluctuates so much. One day or hour it can be 20/20 and then change to 20/40, 20/100, 20/200, or 20/400. The student can see clearly and then see double or all color is drained from their vision. How frustating that would be!!! Can you imagine sitting in class, following along with the discussion on the board, and then your vision changes and you can't see anything on the board no matter how hard you try or all the color suddenly drains out of your surroundings and everything is gray! What about reading that textbook and the words all of a sudden blur together and you feel this sharp pain in your eyes that won't go away. Your teachers can't see anything visible happening so, because you are a teenager, they think you are faking it to get attention. After all, you just saw clearly a few minutes ago! At least Julia has a dog guide to help people appreciate that she really does have a visual impairment. What about those students who suffer from this disease that do not have a dog guide or cane (nor do they need one), but still have difficulty seeing across the room at times or reading their textbooks? What about the teen that doesn't want to appear different, but really needs the large print or some kind of magnification device for when those flare ups occur? Does it really matter if the student can read regular print on some occasions and chooses to do so; but not on other occasions and really needs accommodations during those times?
Since the vision impairment affects the student's education, the student does qualify for visual services. My recommendations, as a vision teacher are as follows, recognizing that all students are different in his/her needs. Each student needs to be evaluated individually and an Individualized Educational Plan (IEP) set up. I found the most helpful was the use of the iPad because it is cost-effective, can be set up as a near and distance magnification device, does not cause a social stigma, can be used to organize homework and communicate with teachers, can have a large print talking scientific calculator that is easy to see and use, can be used with Bookshare.org to download books so the student can either read or listen to them depending upon fatigue and vision needs, and has the Zoom and VoiceOver features.
1. That Student receives direct services by a Teacher of the Visually Impaired, for direct service in learningto use the iPad3 and apps for low vision. That he/she receive consultation services for ordering materials needed, helping teachers know how to accommodate him/her in his/her classrooms, and making sure all teachers are aware of how to accommodate Student.
2. That books, homework, andmaterials be at least 18 pt. point font. However, Student should be allowed to adjust the size font he/she uses depending upon his/her fluctuating vision.
3. Student should receive histextbooks in auditory format and large print with enlarged color pictures. Materials provided should be high contrast. All pictures should be labeled if color is an issue and color is important such as in map skills.
4. That Student be given preferential seating in the classroom where he/she is close to what needs to be visually processed.
5. That Student use an iPad3 as a distance/near magnification device together with a keyboard, as well as calculator, a place to do his/her assignments using Pages and Notes, and have access to the Internet to access email for his/her assignments.
6. Student will need extended time to get his/her assignments done.
7. Student use speech to text such as the Dragon Dictation app on the iPad3.
8. Student will need breaks due to fatigue, headaches, spasms, and pain he/she experiences frequently.
9. Student will need special accommodations for any state tests and classroom tests such as extended time, large print, use of technology, and a scribe.
10. That Student, the aides, and teachers working with Student are aware of emergency procedures in case offire, earthquake, etc.
Tips for Teachers in general who have MS students:
· Learn more about MS.
· Tap into the strategies that teachers of students with learning disabilities use for their students. Become knowledgeable about different learning styles. Then you can use the approach best suited for a particular child, based upon that child's learning abilities as well as physicalabilities.
· Be inventive. Ask yourself (and others), "How can I adapt this lesson for this child to maximize active, hands-on learning?"
· Learn to love assistive technology. Find experts within and outside your school to help you. Assistive technology can mean the difference between independence for your student or not.
· Always remember, parents are experts, too. Talk candidly with your student's parents. They can tell you a great deal about their daughter or son's special needs and abilities.
· Effective teamwork for the child with MS needs to bring together professionals with diverse backgrounds and expertise. The team must combine the knowledge of its members to plan, implement, and coordinate the child's services.(MS Resource Center, 2012)
Courtney, S. (Winter, Spring 2013). The hidden symptoms of MS. The Motivator: Bringing information to people with Multiple Sclerosis.
Nauen, E. & Sullivan, G. (Spring 2013). Speaking the language of MS. Momentum: The magazine of the National Multiple Sclerosis Society.
National MS Society: http://www.nationalmssociety.org/index.aspx
Multiple Sclerosis Foundation: http://www.msfocus.org/
Pediatric MS: http://www.msfocus.org/article-details.aspx?articleID=821(Very important information for school personnel)