What About Us? Workshops for Siblings of Preschoolers
With a Visual Impairment.
Focus: Early Intervention
Perkins School for the Blind Preschool Services
Watertown, Massachusetts 02472
The preschool at
Perkins School for the blind was started in 1979 by Sherry Raynor, and is now
headed by Tom Miller. It is small,
serving about ten children between ages of three and six. Blind, blind
multi-handicapped, and low vision children are served. The most common diagnosis used to be R.O.P.,
but is now optic nerve hypoplasia. I
have worked there for seventeen years.
Fifteen years ago, our psychologist Mary Talbot and I had a request from
some preschool parents to have some special groups for their sighted children, and for better or worse,
we have been doing groups , at least three times a year,ever since.
These sighted siblings have already had a lot of opportunity
to see other blind children and to meet other brothers and sisters. The other part of my job is with our Infant
Toddler Program for babies from birth to three. Preschool age children are invited to our parent baby groups with
their parents and younger sibling with blindness. A special volunteer is assigned to these children, and they have
a lot of fun together . During our
summer session older brothers and sisters can attend.
At age three, most of the over 400 babies in the Infant
Toddler Program cease Perkins services.
Those families are invited back for an alumni day during the winter, a family picnic in the
summer, and the New England Regional Conference in the spring, which includes
special activities for siblings.
Why do we hold these special workshops when there are
already other opportunities for siblings?
Parents want something special
for their older children more as primary prevention than because they have any
current problems. . Don Meyer, who has
a web site for Sibling Support, says that research shows that
have a life long and ever changing need for information about disability
or illness.(Labato 1990)
have a feeling of isolation when they are excluded from information
available to other family members, or ignored by service providers.
have feelings of isolation when they are denied access to peers who often
share their ambivalent feelings.
have feelings of guilt about having caused the illness or disability, or
being spared the condition.(Koch1986)
have feelings of resentment when the special needs child gets more
attention or is over indulged.
have a perceived pressure to achieve in academics, sports or behavior.
have increased care giving demands, especially for older
have concerns about their role in the future of their brother or sister
with a disability.
Most of the children in our
workshops are between four and nine, and are not showing any troubling behavior that is attributed to
their sibling’s blindness. These
children have adapted. They have learned to put toys in their sibling’s hands,
how to sing songs to calm then down, and how to guide them safely. At age four or five, they see their sibling
as a baby, like themselves, only younger and less skilled. These children were not expressing guilt,
jealousy, or fear about the future.
They did however express anger at their younger sibling always getting
their favorite tape in the car, or wrecking a meticulously built construction,
or standing with their face in front of the TV and blocking their view. Annoying yes, but not too different from any
What we wanted to do in the
workshops was :
some peer support for the brothers and sisters.
some information about blindness.
a chance to play with equipment, like braillers, pre-canes, therapy balls,
and therapy swings.
some experiential exercises under
blindfold, and a chance to discuss them.
some acquaintance with the rest of the Perkins, the Braille Library, the
pool, the gyms, the older students.
a chance to learn about what goes on at school for their brother or
sister-their schedule, their schedule box, their language symbols.
There is a national program in the USA called Sibshop,
developed by Don Meyer at the Sibling Support Project in Seattle. These
workshops, usually a series of eight, are aimed at children ages 8-13, who have siblings with mental
retardation. Although Mary and I have used many of their games and
suggestions, we wanted to capitalize on the unique aspects of vision loss, and
aim the activities at a younger level.. We meet a week before the workshop ,
when we know who will be attending, and plan more activities than we can ever
finish in three hours’
What do we do?
always start with a family picture-their family on vacation, their family
with them doing something fun with their preschool sibling, etc. The children then one by one talk about
their picture, who is in their family, and describe what they are doing,
from playing basketball to going on a whale watch.
play a game of Sibling advice letters called “Dear Aunt Blabby”, but we
don’t use the ones in the Sibshop Book, we make up our own. For instance, “Dear Aunt Blabbly, My sister is blind. She is a terrible sleeper, and she
sleeps in the same room with me.
She goes to bed later than me and she still wakes up in the middle
of the night and makes noise. My
Mom and Dad won’t give her a bottle or something to make her go back to
sleep. Sometimes I get tired at
school the next day. What should I
do? Signed, Sleepy “ We then ask the children how they
would help Sleepy, and then the leaders take the suggestions from the
expert children and put them into
a letter to Sleepy. This is a
always do something active outside, like a trust walk in pairs to the
playground., with each taking turns under blindfold. Sometimes the destination is the
Perkins Museum, the library, the snack bar or the swimming pool. .
- A mini tour of the Perkins Braille and
Talking Book Library is always enjoyed.
They get to see where that material that arrives in their home
comes from, how big Braille books are and how important it
is to keep then together with their mailing cases.
- A good
way for the children to get some exposure to older students is to have our snack at the
Student snack bar during a break from classes at the upper school. Being waited on by a deaf blind
teenager and her coach is quite an experience., and leads to a lot of good
learn something about Orientation and Mobility. The children use canes,
walk-alone walkers, and pre-canes under blindfold, one at a time in
pairs. In the discussion later,
they talk about how comforting it
is to hear the the bells, how scary it is to walk down hill, and how it
helps to have someone talk to you when you are walking.
children love to learn about Braille, use the brailler, , write their name
with tac tiles, solve Braille puzzles.
There is a book called “The Secret Code” that we read to the
children. Working with Braille is
something we do in small groups, which encourages taking turns and
have guests , an adult person with blindness, our preschool music
therapist with her instruments, and a guide dog and her master. The children ask them lots of
play games about the senses. The
listening game, which is a tape with about 20 environmental sounds on
it. The sniff game that has
smells, and a touch game where the children reach into a grab bag and try
to guess what they have touched.
play games about feelings and emotions.
The children throw bean bags at cards that have words such as
happy, sad, angry or fearful on them.
They tell about a time that
they have felt that way. Then we
change the game and they tell about a time they think their sibling at the
preschool has felt that way. We also play, “I like”, where they name
something they like. Then they say,”My sister likes”, and they say
something abut their sister.
of preschool activities such as swimming, singing and horseback riding
have been shown to the group. We
have also shown a video called “Brothers and Sisters of Blind Children”,
which is very good, but a little over the heads of the children..
activities are very important. We
have a blind fold activity where the children are in pairs, and in turn
they must go to the bathroom and wash their hands, choose a snack, unwrap
and eat it, pour some juice, drink it and then put their trash in the
waste basket. First we have the
partner help by talking, and then we have them be silent. We then all
discuss together how hard this activity can be.
always have a meal together. The
children can do this blindfolded or not.
They love to sit in their sibling’s seat, and read their feeding
goals on the wall. Dinner is a
good time for talking about food textures, lumps, smells, and how much
time their mothers need to feed their sibling. They talk about special diets, metabolic diseases, and what
it is like to eat in public with their sibling.
always read a story to the children about blindness, or other
disability. In many of these book,
the blind child or adult is in the
hero role. One book is told from
the viewpoint of a guide dog.
Of course, we do not do all of
these activities in every workshop, but we
always do a family picture, and
we eat together. WE try to let the
discussion of the activities go on as long as the children want. We allow them an opportunity to talk about
their negative feelings, but also to say how proud they are of their brother or
sister. The children share some useful
strategies that have worked for them. As leaders we have to be ready to deal with
a comment like “Now I know how my brother feels when I sneak up behind him and
push him”. We need to be part group therapist and part camp counselor!
It is very important to have
enough help for the workshop, and to have everything planned and set up in
advance. We have used other preschool
staff and volunteers to help us, so we can have some small group
activities. The ideal is to have a
helper who has a sibling who is
disabled. When we have had some
teenagers in the group, we have given them a private room with this staff
member so they can just talk and share experiences. The younger children need the games to get them talking and
sharing their feelings with each other.
Sibling Workshops are a lot of fun
for the leaders, because the children seem to enjoy themselves so much, and
really get into the activities. We plan
three a year, one on Veterans Day, which is a public school holiday, but a
Perkins work day, one in the spring from 3:30pm to 6:30 pm, and one during the
summer session in the late afternoon.
We have tried doing a Saturday, but American children are very busy on Saturdays. Parents must provide transportation for the children, which
sometimes means bringing their preschool child with them in the evening. The parents are willing to schedule this
activity for their children because they feel it is something that will benefit
the whole family.