What About Us?  Workshops for Siblings of Preschoolers

With a Visual Impairment.

Focus: Early Intervention

Topic: Family

Ann Ross

Social worker

Perkins School for the Blind Preschool Services

Watertown, Massachusetts 02472

USA

617-972-7333

Annchan53@msn.com

 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

1. Siblings have a life long and ever changing need for information about disability or illness.(Labato 1990)
2. Siblings have a feeling of isolation when they are excluded from information available to other family members, or ignored by service providers.
3. Siblings have feelings of isolation when they are denied access to peers who often share their ambivalent feelings.
4. Siblings have feelings of guilt about having caused the illness or disability, or being spared the condition.(Koch1986)
5. Siblings have feelings of resentment when the special needs child gets more attention or is over indulged. 
6. Siblings have a perceived pressure to achieve in academics, sports or behavior.
7. Siblings have increased care giving demands, especially for older sisters(Seligman1979)
8. Siblings 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 other family. 

What we wanted to do in the workshops was :

1. Provided some peer support for the brothers and sisters.
2. Provide some information about blindness.
3. Provide a chance to play with equipment, like braillers, pre-canes, therapy balls, and therapy swings.
4. Provide some experiential  exercises under blindfold, and a chance to discuss them.
5. Provide some acquaintance with the rest of the Perkins, the Braille Library, the pool, the gyms, the older students.
6. Provide 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?

1. We 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. 
2. We 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 favorite activity..
3. We 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.  .
4. 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.
5. 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 discussion.
6. To 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. 
7. The 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 cooperative play.
8. We 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 questions..
9. We 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. 
10. We 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. 
11. Videos 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..
12. Food 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. 
13. We 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. 
14. We 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.

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