Including Students with Albinism


NARRATOR:
The name Perkins
carved in stone. Below a gothic tower, a boy
navigates with a cane. Perkins, in collaboration with
the National Organization for Albinism and
Hypopigmentation, presents: 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. 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,
I say, “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, that 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. NARRATOR:
Fade to black. 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. 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. 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. NARRATOR:
Fade to black. 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. 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. 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. NARRATOR:
Fade to black. 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. NARRATOR:
Fade to black. 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. NARRATOR:
Fade to black. 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. NARRATOR:
Fade to black.

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