Spina Bifida

Relationships and Developing Independence

A relationship is a connection between people. You have relationships with your parents, brothers and sisters, friends at school, teachers, the people who help you with your health care, and even the delivery man. Some relationships are with casual acquaintances. Others involve deep feelings that may develop over a long period of time.

Your relationships will come and go depending on your life experiences. Relationships with your parents and cous ins are pretty automatic and will last a long time. They require ordinary care such as respect and cooperation and communication. The same is true of relationships you form at school or work. These are the relationships you develop with the people you see every day. Relationships grow just like plants. They start small and can develop into real friendships. The more relationships you develop, the greater the chance for friendships. Just like making strawberry shortcake. You don’t just pick one strawberry. You pick a whole basketful, because not every strawberry is shortcake quality. Relationships are the same way—you need to develop lots of relationships to cultivate a friendship.  

This article offers tips on turning relationships into friendships. It also suggest ways to troubleshoot problems with relationships outside of your family. 

Building Friendship

Making and keeping friends is easier for some people than for others. You may think that because of spina bifida and some of your difficulties and extra equipment that you may have a harder time making friends. That isn’t necessarily so. The biggest limit anyone has is their attitude. You can’t really do anything about having spina bifida, but you can control your attitude about it. People will pick up on your attitude. If you act like you’re a pitiful loser because you have spina bifida, people won’t want to be around you. If you have high self-esteem, you will feel more confident and sure of yourself. Most likely you will be someone who makes friends easily. Spina bifida is only a part of who you are, so be proud of what you have accomplished. You are a person first who just happens to have a condition known as spina bifida.

Friendship Facts

1. Everyone wants to have friends.

2. The best way to make friends is to be one.

3. Friendships are give and take.

Essential Social Skills

People who always seem to have a lot of friends and things to do are usually called popular. How did they get that way? People are not born popular. They have learned the social skills of making friends. Skills used in social situations are learned and developed with experience and practice. These are complex and subtle ways of behaving, communicating, and responding to people. Social skills can be learned through observation, awareness, and problem solving.

Observation

Through observation, you watch how other people handle situations that are hard for you. For example, you may see friends get teased and embarrassed and notice that they don’t let it bother them. They smile and laugh with the person who made the remark rather than becoming angry and hurt. Or you may observe how a popular classmate enters into a group and starts a conversation. He or she might look directly at someone in the group with a friendly “Hi!” or “What’s up?” Imagine yourself starting a conversation or handling teasing in a similar situation.

Awareness

Awareness means noticing the “cues” that others give you. These are like clues that give you a hint of something. Mothers are very good at giving cues to their children when they want them to behave in a certain way. The cue might be a stern look when children are giggling in church or “Quiet!” whispered in a serious voice.

To make and keep friendships, you need to know how to both send cues and to read or interpret cues.

Interpreting Cues

 Interpreting cues means watching for a change in facial expressions, listening for a change in someone’s tone of voice, or paying attention to body language.

For instance, Randy kept talking to his friend, Tim, after the movie started. Tim did not look at Randy, nor did he answer. The clue, or cue, was that it was not the appropriate time for conversation. Tim continued to ignore Randy’s comments so Randy would get the clue to be quiet.

Sending Cues

When you send a cue, you use your own voice or body language to help get your message across. For example, Becky complained that no one ever stopped to talk with her at lunch. Her counselor observed that Becky, who uses a wheelchair, always looked down when someone talked to her or when she said something. Looking down and not directly at the person you are addressing makes it hard for the person to “read” your expressions. Becky produced a more “inviting” look by holding her head up high and looking directly into people’s eyes when she spoke.

Joining in the Conversation

Observation and awareness are important in keeping up with conversations. People often talk and move on to new subjects rather quickly. Conversational skills require listening for new thoughts and opinions and responding appropriately to what is said. Some techniques for entering a conversation include:

  • Listen for important ideas to talk about.
  • Respond to someone’s comment.
  • Ask a question and share opinions.
  • Give a compliment.
  • Make eye contact.

You can find interesting things to talk about in books, newspapers, magazines, and the  Internet. Why not pick a hobby or something that interests you and become an expert? 

Problem Solving for Embarrassing Situations

Being able to handle embarrassment is another skill that is very important in social  situations. Everyone gets embarrassed at one time or another during school, work, or  social activities. Most embarrassing situations can be handled with a smile or some  humor. You can plan for these situations by thinking of some really horrible,  embarrassing moment and imagining ways you would respond. For example, what if your  wheelchair tire went flat during the awards banquet? What would be a good way to  handle it? Think of the words you would use and even something humorous to say about  it. 

Problem Solving for Embarrassing Situations

Rehearsing or role playing difficult situations is a great way to prepare for embarrassing  circumstances or ones that make you uncomfortable. 

Think of at least two solutions to the following situations: 

The “What If” Game

What If… I dropped my tray in the cafeteria?

What If… I’m not picked(or picked last) fort he relay team in gym class?

What If… I left my homework on the kitcen table again?

What If… My clothes got wet ?

Managers in business or executives are always playing the ”What If” game and coming up  with new solutions to problems or new products. They have developed the skill of  thinking ahead and problem solving. This is why they are the executives. 

People with spina bifida are also managers be cause of all the planning it takes to  coordinate and manage their health care. You have to plan ahead to make sure you have  the equipment you need for hygiene and a bathroom with enough room to maneuver. 

Likewise, you need to know where the accessible entrances are, arrange for the kind of  transportation you need, and be prepared for appointments. These are personal life skills  to work on and develop. Being a good manager will also help you to be out and living on  your own. 

Teasing and Personal Questions

A special source of embarrassment for many young  people with spina bifida is dealing with teasing and personal questions.  Teasing can be friendly and affectionate—a way to express feelings and bond some  friendships. But teasing can also be stinging and humiliating. Likewise, ques-tions about  spina bifida, other difficulties, or equipment you use may be well-intentioned  and aimed at getting to know you better. But questions can also be tactless, intrusive, and  personal. If you are being teased or questioned and it is uncomfortable and hurtful, you  can do a couple of things: 

1. Toughen up and let the teasing roll off your back. Look the teaser in the eye and  completely ignore the comment. Deep down inside, you know anyone who teases  destructively is a bully with a poor self-image. 

2. If you feel like you must say something, try: 

  • “Back off and leave me alone.”
  • “This is my concern and not yours.”

You don’t want to be pulled into a verbal fight. Just deliver a comeback and go on with  your activity. 

3. To deal with intrusive remarks, think of the questions or comments that bother you the  most and plan for your response. Examples: 

  • “This is not a topic 1 care to discuss with you.”
  • “I use a wheelchair to get from here to there.”
  • “I was born with spina bifida and my legs work differently.”

Don’t Wait for Others to Make the first Move

Some people see differences in others as barriers to friendship. They may not think a  person using a wheelchair is able to participate in activities or go places that people who  walk unassisted can go. You can’t change the way people think, but you can show them  the part of you that is similar to them. Developing common interests or hobbies allows  you to be a person who is interesting and participates in activities. 

Having a variety of experiences and activities creates more opportunities for friendships.  Participating in school clubs or community groups increases the number of people you  meet and gives you a common goal to work on. Schools and neighborhoods have youth  clubs or teen councils that need people to make phone calls, plan meetings, and  participate in the activities. Service clubs and church groups are also great places to meet  people and focus on a project. 

A lot happens when two people work together on a project. They:

  • Meet and talk with new people
  • Share a goal
  • Feel good about accomplishing something.

The fact that you use a wheelchair, walker, or braces becomes less important because  your ideas and interests are what describe you. 

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