Including Students with Albinism
By Susan Dalton — Read full transcript
Susan Dalton offers a perspective on including students with albinism in the regular educational classroom. Dalton suggests that teachers who are new to having a student with albinism in their classroom should educate themselves on the condition and be comfortable with the terminology.
Chapters: 1 — Including Students with Albinism; 2 — Albinism and Vision Impairment; 3 — Classroom Accommodations for Students with Albinism; 4 — Considerations for Activities Outside the Classroom; 5 — Advocacy and Early Intervention; 6 — Resources and Support.
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CHAPTER 1: Including Students with Albinism
NARRATOR: Perkins, in collaboration with the National Organization for Albinism and Hypopigmentation, presents: Including Students with Albinism with Susan Dalton.
DALTON: In the United States, one in 17,000 people have albinism, and I think what's interesting, too, is one out of every 100 people is a carrier of the gene.
NARRATOR: We see a woman with albinism walking down a busy sidewalk on a sunny day. The woman wears a wide-brim hat and sunglasses.
DALTON: One of the first things is that a teacher who is new to having a student with albinism in a classroom is to just become educated on the condition, you know, look it up, but to also become comfortable with the terminology.
The term we would want to avoid is referring to the student as an albino.
The student should be referred to as a child with albinism, and the condition is albinism. Sometimes you have to use that term "albino" to explain it to other people so they understand it, so it doesn't hurt to, you know, use it in a way that explains it a little better.
I've found that being helpful. And then it also can be that the child, or even the family, some may not be as sensitive about the term "albino" as others, but for you... you know, a teacher to be an example, and to use the correct terms in front of the kids, and that will just help the child's adjustment to the classroom as well.
NARRATOR: The camera pans from right to left in a classroom, and we see the students at their desks. The shot settles on a young girl with albinism, who has an open book and a worksheet on her desk.
DALTON: Probably the best thing is to, you know, do, you know, as much as possible, your best job of not having the child, you know, stand out.
They're going to be standing out, you know, regardless, but what I like to tell the kids or even as they get older too, is, "You're going to be noticed whether you like it or not," you know, the whiteness tends to attract attention, and even just to use that to your best advantage, you know, it's better.
But I just find, too, if you approach it from a learning perspective, if you talk about things, talk about how the kids are different, talk about kids' hair color, how people are all different, and then just make that another part of the differences that everybody else has.
We can go in and explain it in a little more detail. I think sometimes it comes into play if the kids see a child's parents and the parents are, you know, normally pigmented and they don't really look like the parents. Then, you know, you can talk about it in more detail, and it depends on the age of the children, too.
CHAPTER 2: Albinism and Vision Impairment
DALTON: The term "albinism" refers to a genetic disorder, and it involves the lack of pigment production. So most people with albinism have lack of pigment in their hair, their eyes and their skin.
How it mainly affects, you know, the education of the student is the fact that their vision is impacted. So all children with albinism, all people with albinism, are visually impaired to some degree.
NARRATOR: We see various close-ups of people with albinism. Their eyes are distinctive in the lack of pigment. There is also a degree of nystagmus, involuntary movement of the eyes, that varies from person to person.
DALTON: First of all, that's how albinism is technically diagnosed, it is visually, and that determines the diagnosis, but first of all, I think the most noticeable thing is the lack of pigmentation.
There will be different degrees of this, you know. Some have eyes that are very light blue, like a slate blue, almost a gray, and some might have a little pigment in them.
But because of the pigmentation... there's pigment in the retina as well. So the retina's underdeveloped, the central point of the retina's undeveloped.
It also results in nystagmus, which is an involuntary movement of the eyes and the shaking of the eyes.
Photophobia, that's sensitivity to light. That's a big factor. So different lighting conditions can make a big difference in the vision of someone with albinism.
NARRATOR: From inside of a store, we watch a woman with albinism wearing dark sunglasses come through the door. As she transitions from the bright sunshine to the artificial lighting of the store, she reaches into her purse and pulls out an untinted pair of glasses to replace her sunglasses.
DALTON: There's a spectrum, you know, of vision impairments with it. But the good thing about it is that probably the worst case, you know, the most severe vision impairment is about... corrected to about 20/200, but some can get corrected between, you know, 20/60 with correction or, you know, just using their regular vision.
And then even the degree of, like, photophobia, the light sensitivity, some may be more light sensitive than others, you know.
So I think you can't just take the diagnosis and make a blanket statement on how that child is going to react, you know, or how their vision is going to be affected.
NARRATOR: We see a number of young students exiting a classroom into the exterior courtyard. One student with albinism wears dark sunglasses. In another clip, two young people with albinism sit side-by-side. Both wear glasses, but only one has tinted lenses.
DALTON: In my experience, I've seen so many people with albinism, and as many people as I've seen, I see different colored tint in their lenses, some wear glasses, some don't, some wear contacts.
And the thing is that often, they can correct a part of it, a part of the vision impairment. Some may have like an astigmatism that can be corrected or some of the acuity, but it may improve it a little.
It never improves it all the way.
But it's very individual, too, because... I think one thing that teachers need to know is they'll prescribe glasses often for kids or different devices and, you know, it may help just a little bit, but then to some kids, just wearing these certain glasses and things like that, if they don't really see the big difference then, you know, the student might not be, you know, good with wearing them.
CHAPTER 3: Classroom Accommodations for Students with Albinism
DALTON: I really feel that public schools today are well-equipped to handle students with albinism in the regular classroom.
The legislation that's in place, the IDEA, that, you know, provides for free and appropriate public education really mandates that schools do offer specialized services as needed for students with albinism or with vision impairments.
NARRATOR: A young woman with albinism sits at a desk and reads a nonmodified worksheet. In order to see the print on the worksheet, the young woman must hold her head very close to the desk.
DALTON: In general, it's the vision, and for the most part, a student can go into a regular classroom and, you know, do well with some minor adaptations and just some environmental changes and be able to keep up with the other students, you know, with little difficulty.
Some of the things that should be looked at, first of all, is the print size of reading materials.
As the child is in the early grades, up even until third grade, the print size is usually pretty decent for the child to see, so there isn't too much trouble that way.
Teachers are going to find that the student is going to want to get things up closer to see them, and that's okay. There are often accommodations, even by putting things on a reading stand or bringing things up closer to them, to make it easier and avoid neck strain.
And then it comes into play... probably the biggest issue is distance viewing, so if things are being projected on a screen, you know, movies or overheads or PowerPoint things, that can be difficult to see, as well as writing on a chalkboard.
Whiteboards are very difficult. Sometimes the glare on whiteboards can be problematic, too.
NARRATOR: A toddler with albinism sits on the floor with an open audio book in her lap. The book has brightly colored buttons which, when pushed, make various sounds or narrate some of the text.
DALTON: Some students might benefit from using recorded materials, you know, recorded books. Also, when it comes into learning handwriting or writing things, using, sometimes, dark lined paper, using a marker instead of a pencil.
These are just some accommodations that can be really worked out, you know, with the teacher of visually impaired, too. They can work with the student to see what works best for them.
NARRATOR: A pad of paper with thick, widely spaced, dark lines is shown, along with dark markers.
DALTON: I think one of the best resources for a regular classroom teacher is going to be a teacher of visually impaired.
Depending on the needs of the student will depend on how much that teacher is going to have to be involved, but certainly to use a teacher of visually impaired as a consultant to work with the teacher, the teacher can use this person to look at materials, for them to help make a determination, you know, if any changes need to be made.
The teacher of visually impaired also can provide materials that are more accessible for the student.
And then even at, you know, younger ages, the teacher of visually impaired can work with the child on helping to develop some good scanning and tracking skills, also to work on their listening skills, to help them improve that, and sometimes even working on handwriting, that can be a little challenging.
But certainly, a teacher of visually impaired should be a part of the whole classroom experience, you know, to whatever degree is needed by that child.
CHAPTER 4: Considerations for Activities Outside the Classroom
DALTON: Make sure you don't limit the child just because of the diagnosis of albinism.
There are things that could be done in preparation for activities, outdoor activities and trips, things like that, that could be helpful.
I think the one thing I observe, like, on the playground and where there's lots of running around, maybe if the student is just taken out there ahead of time, shown any drop-offs, changes in level, level changes or dangerous areas that they might just be aware of, that always helps.
And going out on field trips to just make sure people are aware that the child has some vision needs and for people to possibly have to point out things as well.
Like I said, steps or changes, you know, in the environment.
NARRATOR: A young boy with albinism plays soccer with his teammates. The boy is wearing dark sunglasses as he chases after the ball.
DALTON: I think that the student's involvement in extracurricular activities and community events is really one of the best things that helps their general adjustment.
Having the kids in band or in music programs are just really good opportunities for them to show their talents and to be with a group, a real team approach.
Certainly too they can participate in sports. There are some sports that might be a little more challenging, and I never say not to do certain sports, because as soon as I do that, I'll find out that there's a student with albinism who excels at this, but in general, baseball, fast-moving objects like that is a little more challenging.
But kids play soccer, you know, swimming, track, cross country. Sometimes, you know, the kids have a little trouble getting lost and some of the things like that, but just to encourage them to be involved in all these activities, really, I think it really helps them and it helps them just be a more well-rounded person, too.
CHAPTER 5: Advocacy and Early Intervention
DALTON: That kind of situation is going to vary, you know, depending on the background. Some little ones with albinism are already getting services and early intervention, so they'll be in the system and they'll be seeing, you know, people in the field.
But I think families need to understand that they don't assume that things are going to be taken care of for them.
So as a parent, I would advise them, you know, as a child is beginning to enter the school system, to advise the school district that the child does have a vision condition that will require some accommodations and possibly need the services of a specialized teacher.
So parents really need to be proactive in that area. And then I think, too, if there's a regular classroom teacher that, you know, may see some issues this way and may feel that they aren't able to support the student, that they should definitely make a recommendation to, you know, for an evaluation.
I came into this field... First I was a parent, you know, working with the kids, then I'm a teacher, and then now my kids are grown, so they certainly tell me, you know, all the things I've done right or done wrong, and there have been times, like, I've gotten a letter from someone or a teacher saying,
"I have this sixth-grade student with albinism, "and I was wondering what the best way to do a certain thing would be."
And I know recently, I sent a note to my daughter, I called her and said, "What do you think would be the best thing?"
And she said, "Have you asked the student?"
And that's one of the things she's really... my kids have really made me realize was, like, you really need to find out from that student what works for them and incorporate their wishes and desires in with any decision that's made.
CHAPTER 6: Resources and Support
DALTON: First of all, I just understand how painful it is for a parent to, you know, just to be in a social situation and to see your child stared at or gawked at.
You know, some people, it's just unbelievable what you see. But then I think back to when my kids were born and when my daughter was diagnosed with albinism, I had no clue what it was.
So I didn't, you know, know anything about it, and I had to learn. So I think of people, you know, seeing someone with albinism.
They don't know, and sometimes the best approach is to just give them a little bit of education on it. "Well, this is why it happened, this is the way it is," and understand that they are just curious, and it is different, and if you can explain it in a way that will educate them, that they in turn can educate others, that, you know, hopefully people will be a little more sensitive, you know, to their future encounters of people.
NARRATOR: In a series of video clips taken at a NOAH conference, we see adults and children with albinism renewing acquaintances and enjoying one another's company.
DALTON: With albinism, I think that's one of the biggest helps, I think, for, you know, the children, the students, and even for the families, to meet other people who share the condition.
When I see the children get together with NOAH, the National Organization for Albinism, when they have their conferences, it's such an interesting bond to see with these kids, and I've found with my children that they have such a unique friendship with other people with albinism that they don't share with their other friends.
They talk about their vision, they joke about not seeing stuff, about not recognizing people, and talk about people touching their hair and things like that, that happens often.
And I think it's just been extremely helpful, you know, in my situation, to have that. Just as a parent to see that in the kids, to see that this is really neat for them to have that, to see adults who are successful adults and that are married and have children and things like that, that they may think may not happen for them.