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By Susan LaVenture, National Association for Parents of Children with Visual Impairments (NAPVI) Executive Director, Watertown, MA

Reprinted with permission from FamilyConnect,

Abstract: Susan LaVenture, NAPVI president, blogs about what it's like to be a parent, how to advocate for your child, what new resources she's found, and much more. Several disability organizations promote awareness of bullying during Bullying Prevention Month by offering resources on their websites.

Keywords: Family Wisdom, bullying, visual impairment, blind students

Bullying, and how to prevent it, is an issue that has confronted schools and families across the country. It is especially a concern for families of children with disabilities, including those who are blind or visually impaired, who may be perceived as vulnerable and therefore a target for bullying and teasing by their peers. "What Should You Do if Your Blind or Visually Impaired Child Is Bullied" offers 10 guideposts for families and schools to address the issue. A copy can be downloaded at http://www.dcmp.org/ai/bullying/blv_web.pdf

To promote awareness of the issue, the PACER Center's National Bullying Prevention Center has designated October as National Bullying Prevention Month. The National Bullying Prevention Center, whose goal is to engage and educate communities nationwide to address bullying through creative, relevant, and interactive resources has organized resources and events for this month. A listing of these resources and events may be found on its website in recognition of National Bullying Prevention Month.

In addition, the Described and Captioned Media Program (DCMP) has made available several resources, including tip sheets and videos, for families and teachers on its website at www.dcmp.org/bullying.

We are grateful for the organizations that have focused on the topic of bullying and worked on developing helpful resources for families. We'd like to invite families and children to share their experiences with bullying and their own tips and advice on how to face their unique challenges by replying to this blog. To reply go to http://www.familyconnect.org/parentsitehome.asp and join.

WHAT SHOULD YOU DO IF YOUR BLIND OR VISUALLY IMPAIRED CHILD IS BULLIED? 10 GUIDEPOSTS TO HELP STOP BULLYING

A child with visual impairments faces unique challenges in keeping pace with his or her sighted peers. Add bullying to the mix and you have a problem that can be overwhelming for the student, the parent and the school staff. The solutions are as varied as the classmates, schools and communities where the bullying occurs. Here are

10 guideposts to help stop bullying. What is Bullying?

Bullying is when someone repeatedly hurts or threatens another person on purpose. Bullying comes in many forms. It can happen in person, in writing, online, on cell phones, in school, on the bus, at home — anywhere. Wherever it happens, it’s NOT acceptable.

PREVENTION

1. Recognize that bullying happens to visually impaired kids: Many people cannot conceive of the idea that a blind or visually impaired child would be the victim of bullying. Unfortunately, children with glasses are traditionally the first individuals to be marked by bullies. The University of Bristol conducted a 2005 study that showed children with glasses are bullied 35 to 40% more than children without glasses1. Bullies perceive those with any amount of visual impairment to be weak and therefore a prime target for their aggression.

2. Be alert that bullying might be happening to your kid: Since children with special needs often occupy a lower social standing among their peers, they lack a support system––which the bully recognizes. Bullying can go unreported because children with disabilities often struggle with self esteem issues. They may fail to report the abuse due to their feelings of intimidation, humiliation, or embarrassment. It’s important to speak with your child about bullying. Tell your child in no uncertain terms that bullying should never be tolerated and there is no shame in reporting it.

3. Make sure your child’s school knows the specific problems your child faces when being bullied: Establish a rapport with your child’s teacher and principal. Educate them to the nature of your child’s visual impairments and to your child’s strengths and vulnerabilities. For example, if your child has had food thrown at him in the cafeteria, school staff should be on the lookout to prevent recurrences.

4. Teach your child to be a self-advocate: Teach your child that she has a lot to offer both classmates and school. Encourage your child to get involved with her peers. The more friends your child has, the less likely bullies will target her, since bullies tend to victimize loners without a support network. Encourage your child to speak out when something seems wrong. If she is perceived as having a strong character, that is often enough to discourage a bully from targeting her.

5. Beware of cyberbullying: The cyberbully uses the Internet and social media tools to harass his victims. Matthew Kaplowitz, co-author of How to Talk to Your Kids About Bullying and School Violence and producer of digital media for students with disabilities, recommends that you oversee your child’s computer activities. “Consider installing Internet security filters. They will help you regulate your child’s online experience. Check text messages to make sure that offensive messages aren’t being sent to your child. Teach your child never to reveal personal information online.”

INTERVENTION

6. Be supportive: If you discover that your child is being bullied, don’t wait. Speak to her about it immediately. Listen to your child’s feelings. Be understanding and supportive. Explain that they are not responsible for being bullied nor is there any shame in being bullied––bullying must never be tolerated. Share a story about how you or someone you know was bullied. You are also likely to have strong feelings in the matter, but try to generate an impression of calmness. This is your child’s experience— and it’s a very personal experience.

7. Gather information: Find out everything you can about the incident(s). Who was involved? What led up to the altercation? How long has the bullying been going on? Learn about the school’s anti-bullying policy. Get all your facts organized so you can approach the situation efficiently and effectively.

8. Communicate your concerns calmly with the school: Positive communication is usually the key to getting results. Approach your child’s teacher and the parents of the bully in a calm, objective manner. Let your demeanor show that you are just there to find a practical solution to an unfortunate problem. The other parties involved might respond defensively if they feel you are angry or judging them. You are all going to have to work together on a solution, so eliminate resistance before it begins by communicating calmly.

9. Be persistent: Bullying is not to be tolerated after it has been discovered and reported. If the bullying continues and your child’s teacher doesn’t rectify the problem in a prompt fashion, do not hesitate to take the matter to a higher authority. Alert the school’s guidance counselor or principal. If this fails to bring satisfaction, notify the district supervisor. You probably won’t meet such opposition but always be prepared to take your grievance up the ‘chain of command’. Keep a written record of all the communications and conversations you’ve had with teachers and school staff or school administration.

10. Utilize your child’s Individualized Education Program (IEP): If the bullying of your child is based on his visual disability and the harassment is interfering with your child’s learning, the school is legally obligated to stop the persecution. Your child’s school is also required to provide supportive services that address the effects of the bullying. Set a meeting with the IEP team to collaboratively figure out an anti-bullying action plan.

Final Word: There is no quick fix to the problem of bullying. It is a serious situation that requires the ongoing involvement of family, school staff, and community members.

Once you have come to a resolution, share your experiences with the special needs community. We’re all in this together and the more information that is available, the easier it is for everyone.

RESOURCES AND RELATED LINKS

Bullying and the Child with Special Needs: A website that offers a comprehensive report and online resources regarding bullying and children with disabilities. http://www.abilitypath.org/areas-ofdevelopment/learning--schools/bullying/

Horwood J, Waylen A, Herrick D, Williams C, Wolke D, no shame attached to reporting it. ALSPAC Study Team. Common visual defects and peer victimisation in children. Investigative Ophthalmology and Visual Science. 46: 1177

National Bullying Prevention Center: A website created by PACER, a parent training and information center for families of children with disabilities, to address bullying through educational, creative, and interactive resources. www.pacer.org/bullying/

Stop Bullying: Speak Up: A website, produced by the Cartoon Network that educates kids about the problem of bullying and encourages them to spread the word about bullying awareness and prevention. www.cartoonnetwork.com/promos/stopbullying/index.html

StopBullying.gov: A website that provides information from various government agencies about how students, parents, educators, and community members can prevent or stop bullying. www.StopBullying.gov

This article was prepared in collaboration with the National Association for Parents of Children with Visual Impairments (NAPVI), www.spedex.com/napvi, Hands & Voices, www.handsandvoices.org, and Bridge Multimedia, www.bridgemultimedia.com.

By Catherine Allen, parent and blogger of Thoughts from the Positive Side, Plano

Abstract:  The author shares her daughter’s experience turning what most people would see as a barrier into a detour for finding her unique talents.

Keywords:     Family  Wisdom,  Self  Determination,  Recreation  &  Leisure,  Charge
Syndrome, deafblindness, sign language

Editors’ Note:  Catherine Allen is the author of the blog, Thoughts from the Positive Side: For those who choose to live of the Positive Side on their Circumstances. She has graciously given us permission to reprint one of her recent posts that highlights what it means to live on the positive side of life. To read more, please visit her at www.onthepositiveside.wordpress.com.

As many of you know, my daughter is a Rock Star! Not only does she ROCK as an inspiring person, she literally wants to be a ROCK STAR...along the lines of Hannah Montana or Katy Perry.

 


photo of Rachel Allen dressed like a rock star


At the beginning of the Summer of 2011 Rachel decided to enter an idol contest at the International CHARGE Syndrome Conference. Of course, she decided she wanted to sing and dance!  She had about 3 months to choose a song, create her dance moves and learn the song.  She was so excited!  We downloaded all kinds of songs onto her iTouch  so  she  could  learn  and  practice, practice,  practice! She  would  get  out  her microphone stand, put on her Hannah Montana wig, get in front of the mirror and crank up the songs. This is what she does for fun. For years, she has carried her microphone with her everywhere...in the car, in church, to Camp Summit, to school, to the grocery store...just in case a song came on that she needed to rock out to.

Yes, she is an entertainer at heart and she has big dreams! If you know me and my daughter, you're aware that we just don't buy into the whole idea that something can't be done. I am a fan of fueling people's dreams. I'm very much a realist, but only so I can clearly see what the obstacles are and what I'm up against.  Obstacles certainly have nothing to do with whether or not something is doable.   Obstacles are more like road signs that say Detour: Go this way Instead.   Yes, they are frustrating and can be time- consuming.   They are  often  discouraging,  especially  when  you  really,  really,  really wanted to go that way.  But, I believe even the obstacles that block my path are a gift to me. I will confess to you now, that as I watched Rachel practicing every day, I became concerned for her and her dreams.

For those who don't know, Rachel is functionally both deaf and blind.  But her deaf/blindness  wasn't  an  obstacle  in  this  situation. The  two  areas  that  gave  her problems were her balance issues and her airway/tracheal issues that cause her to need a trache tube.   I think we could have eventually adapted her choreography so she could have successfully pulled it off.  But when she sang, she just couldn't make it through the song without going into coughing episodes and spasms. I watched this for several months until one day after practice, I saw that she was so exhausted from coughing and also frustrated.  I had decided that as long as she enjoyed herself and loved performing, that it was good enough.  But this day, I knew that she was facing reality, her obstacles, and she had become discouraged. She sat in my lap and I told her that I didn't think she would be able to sing and dance at the conference.  "Maybe you  can  just  dance?"   No,  she  wanted  to  sing.   She  wanted  to  sing  like  Hannah Montana, like all rock stars, she wanted to be like everyone else. We sat together for a long time; her limitations and her discouragement circling around us.   I looked around the room and saw that she had set her Teletubbies in front of where she practiced, as an audience.   I said, "Your Teletubbies are wondering why you're upset."  So she started to explain to them in sign language.  "I can't sing.  It makes me cough, cough, cough, so I can't sing.  I'm sorry. (shrugging her shoulders)  I can't sing anymore." I thought I was going to cry. And that's when I saw the Detour sign.

"What if," I said to her, "you signed the song instead?  Without using your voice.  Your Teletubbies need an interpreter so they can understand the words."  (so thankful the Teletubbies can become deaf when necessary.) She wasn't thrilled about the idea but she tried it.  She made it all the way through the song without coughing.  I said to her, "That was beautiful!  You know what?  Almost everyone can sing with their voice, but you know a different language so you can also sing with your hands!  Not everyone can do that!  That's really special." She started practicing signing songs every day and watching people sign songs on YouTube.  She loved it!

You know, I talk about “Living on the Positive Side” because sometimes there are circumstances that we cannot change. Sometimes, we just don't get to be like everyone else. We have unique challenges that make us different. It's easy to give in to self-pity. It's okay, I encourage it, as long as you are aware of what you're doing and call it what it is.  "I'm having a pity party today."  It's all good.  Because you recognize that it is a temporary condition.  It's when you begin to tell yourself lies that I'm concerned with. "I'm not as good as them because I'm different."  "I suck as a person because I can't do something." Living on the Positive Side is about choosing a perspective that supports your unique brilliance.  It's about looking for the Detour signs and acknowledging them as a gift.  Your limitations keep you from being average.  They create obstacles that can lead you to the discovery of a talent, a service, a strength you didn't know you had.  And that  is  something  to  be  thankful  for.  Living  on  the  Positive  Side  is  about  being thankful, even for the obstacles.  I really think that's what the Thanksgiving season is really all about.  It's great to be thankful for all the good stuff in your life. But if you really want to experience the power of gratitude, begin to recognize that most of the bad stuff we complain about can be seen as gifts that guide us to answers we may not have otherwise discovered.

The best part of this story is that Rachel has become somewhat of a role model for other girls with similar challenges.  Rachel has given them the hope of being able to sing and perform, too.  Something they might have dreamed of, but didn't know could happen.  If a deafblind multi-handicapped child with CHARGE Syndrome can be such an inspiration just by choosing to Live  on the Positive  Side of her circumstances, imagine what you can do. Just this week, Rachel told me, "I don't sing with my voice anymore.  I sing with my hands."  There was no grief or discouragement in her words, only pride and confidence. She had faced reality and let it lead her to her brilliance.

Living on the Positive Side...this is what it looks like on YouTube: