How to speak; First person language; Language not to use
What is the proper way to speak to or about someone who has a disability?
- Use Person First language; describe what the person has, not what a person is. Speak of the person first, then the disability (“your son with a hearing impairment” rather than “your deaf son.”)
- Choice and independence are important; let the person do or speak for him/herself as much as possible.
- Give your undivided attention to some one who has difficulty speaking. Ask short questions, which require short answers. Don’t pretend to understand if you don’t.
- When talking with a person who has a disability, speak naturally and talk directly to that person rather than a companion or interpreter. Talk with the person even if he/she has limited verbal abilities.
- When interacting with a person with a cognitive impairment (mental retardation), use simple, but not childish language, and make instructions clear and concise. Talk to adults as adults, not children.
- When speaking with someone who uses a wheelchair, sit down or kneel to place yourself at their eye level. Do not lean on the wheelchair.
Emphasize abilities, not limitations. Emphasize the person, not the disability.
How do you treat a person with a developmental disability?
Like a person!
A Primer on Person First Language
The way a society refers to its members who have disabilities shapes its beliefs and ideas about them. Our language reflects our attitudes toward diversity. A first step to changing attitudes is changing the way we speak about individuals with developmental differences. Person first language emphasizes the person, not the disability.
Person first language is accurate and shows respect for individual differences. To describe differences accurately and in ways that convey respect, put the person first in word and thought; tell the truth without adding judgment; and don’t include a person’s differences if it’s not relevant to the information you’re sharing.
- Say “People with disabilities” instead of “the disabled”
- Say “Child with Autism Spectrum Disorder” instead of “Autistic child”
- Say Baby with Down syndrome” instead of Down’s baby”
- Say “She uses a wheelchair” instead of “She’s confined to a wheelchair”
- Say “Congenital disability” instead of “Birth defect”
- Say “Accessible parking” instead of “Handicapped Parking”
“The difference between the right word and the almost right word is the difference between lightning and the lightning bug.” -Mark Twain
Think of the image that is created by the language used. A person who has cerebral palsy is not a “CP victim.” Someone who has muscular dystrophy is not “stricken by muscular dystrophy.” Words like “victim, stricken, suffers from” promote negative images. When we understand the meanings of words and how they’re misused, we realize they are the tip of the iceberg of inappropriate language and false perceptions.
Labels are extremely powerful. Don’t let a person’s disability become his label. The only label a person needs is their name. Instead of labels, think of all people in terms of their strengths and abilities. The words we use must convey this message.
Deal with stress
Many people don’t realize it, but stress is a very natural and important part of life. We need stress, but not too much stress for too long. Stress helps keep us alert, motivates us to face challenges, and drives us to solve problems. These low levels of stress are manageable and can be thought of as necessary and normal stimulation. But what about when you experience too much stress? There is little doubt that parenting a child with developmental differences is stressful. You may feel like you’re always on duty, with no time off for good behavior, and no one to help. Raising a child with special needs can feel like running a marathon without the proper training. So, we experience stress.
Distress, or too much stress, results when our bodies over-react to events. It leads to what has been called a “fight or flight” reaction. Such reactions may have been useful in times long ago when our ancestors were frequently faced with life or death matters. We react to many daily situations as they were life or death issues. It is how we perceive and interpret the events of life that dictates how our bodies react. If we think something is very scary or worrisome, our bodies react accordingly. Stress is a physical or physiological response to an event or a mental image.
When we view something as manageable, our body doesn’t go haywire; it remains alert, but not alarmed. The more we sense danger (social or physical), the more our body reacts. Problems can occur when we are constantly under stress. If we react too strongly to daily hassles, or let the small over-reactions pile up, we may run into physical and psychological problems. Some common ailments that can be caused by stress are: gastrointestinal problems, insomnia, heart disease, depression, and severe headaches. Possible results of uncontrolled stress could be: drinking, overeating, smoking, and abusing other substances.
What we all need is to learn to approach our stressors in more realistic and reasonable ways. Strong reactions are better reserved for serious situations. Manageable reactions are better for everyday issues. Stress will continue to be a part of life, however it can be controlled. Become aware of what your stressors are how you feel when you are stressed.
Here are some problem solving techniques:
Positive imaging- visualize yourself feeling confident and less stressed. Imagine yourself being in Control and responding in an appropriate manner. Describe your feelings, posture and attitude.
Pro active planning- make plans before things get out of control. This is the get your ducks in a row idea.
Proper physical preparation – be ready for all eventualities. The diaper bag idea – being equipped for accidents and emergencies.
Reframing- Analyze how you describe an event or situation, then consider alternative descriptions or other courses of action. Restate your response.
Learn to relax.
Exercise, get enough sleep and eat healthy.
Talk to friends.
For most advocates stress isn’t just a possibility, it’s a constant. So it is vital for parents to have techniques that work for them and they are comfortable using. Learn ways to manage stress so that stress doesn’t manage you.
Resources on the web
The Arc Michigan facilitates a statewide network of local chapters assisting persons with developmental disabilities and their families through education, training, technical assistance and advocacy.
The Arc of the U.S. is the largest community-based organization advocating for ans serving people with Intellectual and Developmental Disabilities and their families. Resources on disability topics and public [policy are available.
Michigan Alliance for Families, www.michiganallianceforfamilies.org
Provides information, support, and education. This is Michigan’s Parent Training and Information Center, funded by the U.S. Department of Education. They have information on specific disabilities, special education resources, and a network of parent mentors and special education advocates throughout Michigan.
Protects the rights of children and adults with disabilities in Michigan. They have information about: accessibility, Community Mental Health, education, employment, guardianship, health care, housing, service animals, Social Security and voting.
- Expressing your needs clearly and directly.
- Expressing your ideas without feeling guilty or intimidated.
- Sticking up for what you believe your child needs-even though professionals may not agree.
- Knowing your rights and how to get them.
- Documenting what your child needs and all facts pertaining to his/her case.
- Collaborating with service providers and treating them like partners.
- Effective communication.
- Conveying your feelings of self-confidence when you communicate with others.
- Advocating effectively on your own behalf.
- Self-reliance and independence.
- Persisting until you get all the services your child needs.
- Analyzing a problem and pinpointing the area of responsibility before you act.
- Agitating to get necessary legislation passed and implemented.
- Organizing for change.
- Having a positive attitude at all times.
- Being strong when others are weak.
- Joining others who are organizing for change.
- Taking pride in your accomplishments.
- Encouraging your child to have dreams and develop the skills to make those dreams come true.
Assertiveness is not . . .
- Beating around the bush before stating your needs.
- Feeling too guilty or afraid to express your needs.
- Agreeing with professionals-no matter how you feel-because they know what is best.
- Ignorance about your rights.
- Leaving everything to others because they know how to do these things.
- Accepting inappropriate or inadequate services for your child because it’s easier to let professionals handle things.
- Ineffective communication.
- Begging for what is legitimately yours by law.
- Abdicating to others your right to advocate on behalf of your own child.
- Reliance and dependence on others.
- Giving up when you run into red tape.
- Acting precipitously before you get all the facts.
- Letting politicians take care of laws and all that political stuff.
- Accepting the status quo because nothing can be done.
- Giving in to defeat.
- Being swayed by others who have a ‘no win’ attitude.
- Acting ‘only’ on behalf of your own child.
- Being uncomfortable about your accomplishments.
- Discouraging your child from having dreams.
From How to get Services by Being Assertive by Charlotte Des Jardins. Published by Family Resource Center on Disabilities.
- Find allies in any given situation.
- Keep complete and accurate records.
- Ask questions until you understand.
- Be available.
- Assume honorable intentions.
- If you make a promise, keep it.
- Share information, ideas, strategies, concerns, and personal experiences.
- Don’t assume the other person knows what you need. Tell them.
- Be on time for meetings and stay for the entire meeting.
- If more information is needed, make a plan on how to get it.
- Know what you want and need, what you’re willing to let go of, and what is NOT negotiable.
- Follow the chain of command, start at the level nearest your child.
- Be realistic. Ask: Is this appropriate for this child?
- Be informative: share what you know that makes your idea so right.
- Be open and honest.
- Stick to the topic.
- Ask questions before making demands.
- Be creative: If you come with a problem, come with solutions too.
- Avoid stepping into the adversarial role when possible. Being assertive, reasonable, positive, and non-combative may be hard, but the long term results are better.
- When dealing with feelings, use “I statements”—“I feel _____ when you ______.”
- Separate the people from the problem. Attack the problem, not the person.
- Determine the true needs and interests of each side.
- Generate a long list of options and ideas before deciding on the one solution to the problem.
- It may be better to walk away, cool off, and come back later.
- Whatever you say, expect the other side to hear something completely different.
- Develop your best alternative to a negotiated agreement. Know what you will do if you fail to reach an agreement.
- Take the team approach . Ask the group to sit in a circle rather than all on one side opposite the parent.
- Understanding someone else’s viewpoint is not the same as agreeing with it. You don’t have to accept their viewpoint, just see it.
- Every time you feel like “they” are not listening…you probably are not listening either.
- Keep the child’s best interests in the center of the discussion.
- Don’t just be stubborn. Our ideas might be excellent or they may be starting points for even better solutions.
- Remember that schools must only allocate those resources the IEP feels are needed so that there is a realistic chance the child will benefit. An IEP is not a guarantee. It is a working plan.
- Make sure your verbal and non verbal messages are matching.
- Thank people for their help. Often.
- Be persistent—don’t give up.
- Use humor when possible.
- Stay cool!
- Look to the future rather than spending time redoing the past.
Parents should know
5 Things Parents of Children with Special Needs Should Know
Parenting is often a stressful job. Juggling children’s schedules, carpools, activities and homework can wreak havoc in any home. If you have a child with special needs, you may be adding therapy appointments, school management issues, doctor appointments and more to this mix. You can easily become worn out, over-stressed or even depressed. Since your child relies on you, it is important for you to attend to staying healthy both physically and emotionally. What follows are five simple, common sense steps to help you keep yourself feeling confident and strong.
1. Seek out support.
Don’t wait until you are overwhelmed and struggling to look for help. Find people who have children with similar special needs. You will be surprised at how much help, support and information you may receive from them. In your community, check with your school district to see if they offer a Special Education Parent Teacher Association (SEPTA) or similar support group. Even of other members have children with different needs than yours, you will find many common topics to discuss. Check your library or the Internet for national organizations that cover your child’s disability. Often, they offer support for parents through conventions, workshops and publications. There are online groups and listserves (email discussion groups) that deal with virtually every disability. People are only too willing to share their experiences and offer advice, tips and resources. Support can come in many forms and help you in ways you don’t expect.
2. Take time out for yourself.
Even if you feel pressed for time, you need to carve out time to focus on yourself. Set aside your daily chores or work for a little while. Take an hour once a day or even once a week and do something just for you. Exercising, getting a manicure or visiting a local park or place of interest can be refreshing and serve to renew your perspective. Don’t put off things you wan to do until your child is older, or you feel he doesn’t need you as much. By fulfilling some of your needs, you will be happier and more able to tackle issues that may come your way.
3. Cultivate friendships.
You and your child will both benefit if you make an effort to meet and get to now your neighbors and their children. If your child is in a special school rather than the local public school, this is especially important. Friendships made outside the realm of your child’s educational environment can be especially rewarding for you, your child and the other children as well. Children learn compassion and patience when they get to know others not quite like them. By introducing yourself and your child around your neighborhood, you will make some new friends and will not feel so isolated from the community.
4. Follow you gut instincts.
Always remember that you are the expert on your child. No one knows him better than you do. If you feel that a doctor, teacher, or other professional does not understand your child’s needs, find another one. Just because someone has a degree or reputation in a particular field doesn’t mean that they are the right one for your child. The decisions you make with your medical and other professionals can have long-term effects on your child’s life. Make sure you are comfortable with them.
5. Do your own research.
Knowledge is truly power. Don’t rely on the “experts” to make decisions for you and your child. Think of yourself as a member of your child’s team. Find out what you can about all aspects of your child’s disability. Learn about the latest medical treatments and technology available. Ask to meet people who have already experienced these. They will be one of your best sources of information. Research the social and emotional aspects of your child’s disability. The earlier you are informed and the more you know of pertinent information, the better off you and your child will be.
Parenting a child with special needs can be time-consuming and at times, frustrating. Your personal needs should not be swept aside while your child is growing up. Your frame of mind plays an important role in effective parenting and decision-making. Keep these tips in mind so that you can feel content with yourself and confident in your decisions. By following these steps, you and your family will all reap the rewards.
—Paula Rosenthal, J.D.
Tips for parents
TIPS FOR PARENTS
- Focus on your child as a person—not on the disability. Appreciate your child’s many characteristics. The disability is only one. Don’t let the disability define the child.
- Don’t believe everything the experts tell you. Balance professionals’ expectations with your own knowledge about your child.
- Seek emotional support ASAP. Support can come from many sources: family, friends, other parents who have children with special needs, local advocacy groups, and support groups. Another parent who knows what you are experiencing can provide emotional strength, as well as suggestions that may benefit your child. Attend to your marriage and other supporting relationships. Make time to take care of yourself. If you are nurtured, it will be easier for you to nurture others.
- Learn about the disability and help your child from a proactive stance. Read anything you can about your child’s disability. Seek out local, state, and national organizations that have information on developmental disabilities.
- Learn about your child’s and your legal rights as stated in the Individuals with Disabilities Education Act (IDEA) and other civil rights legislation. Use your knowledge to ensure that your child receives what the laws promise.
- Provide your child with opportunities to mix with people who have and do not have disabilities. Practice is key to sociability.
- Expose your child to as many experiences and environments as possible. Learning how to handle varied situations builds confidence.
- Model how you want other people to treat your child. If you regard the child with love and respect, others will follow suit.
- Show your child how you want him or her to treat others. Children watch you and are wonderful imitators. Refrain from criticizing a teacher or other service provider in front of the child.
- Train your child to be a self-advocate. Teach your child how to stand up for him/herself. Self-advocacy training both protects and empowers the child.
- Trust in your ability to be a good parent and remember that you are your child’s most important advocate.
**These tips were gleaned from articles published in Exceptional Parent Magazine and The Pacesetter, the newsletter of the PACER Center in Minneapolis, an information and training center for parents and their sons and daughters with disabilities.
Positive student profile
Answer these questions to create a “snapshot” of your child.
1. Who is ___________________ ? (Describe your child, including information such as place in family, personality, likes and dislikes.)
2. What are __________________’s strengths? (Highlight all areas in which your child does well, including educational and social environments.)
3. What are ____________________’s successes? (List all successes, no matter how small.)
4. What are ____________________’s greatest challenges? (List the areas in which your child has the greatest difficulties.)
5. What supports are needed for ____________________? (List supports that will help your child achieve his/her potential.)
6. What are our dreams for ____________________? (Describe your vision for your child’s future, including both short-term and long-term goals.)
7. Other helpful information. (List any pertinent information, including health care needs, that has not been detailed elsewhere in these quesions.