COPING WITH DISABILITY RELATED STRESS - FND USA

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COPINGWITHDISABILITYRELATEDSTRESSA Quality of LifePamphlet1

BACKGROUND INFORMATIONDATEACKNOWLEDGMENTSPrinted September, 1995Reprinted September, 1998Reprinted September, 2000Over 50 persons across Florida made thoughtfulcontributions as field test reviewers of thiseducational pamphlet. Thank you all.FUNDED BYSpecial thanks are also given to Michele McDowalland Kelly Badeau for their contributions to thegraphic design of this pamphlet.The Florida Developmental Disabilities Counciland the Health Care Task ForceAUTHORR. William English, Ph.DFlorida State UniversityHuman Services & Studies215 Stone BuildingTallahassee, Florida 32306-3001(850) 644-2227Fax: (850) 644-4335FOR ADDITIONAL COPIES CONTACT:Florida Developmental Disabilities Council124 Marriott Drive, Suite 203Tallahassee, FL 32301-2981(850) 488-418010800-580-7801Fax: (850) 922-6702Web Page: www.fddc.orgTDD (888) 488-8633Florida DevelopmentalDisabilities Council2Appreciation is especially extended to the projectadvisory committee for their wise counsel, supportand encouragement: Karen Bickley Ann Moore Steve Dunaway Deborah Ebener Trudy Goski Pat WeitzelSpecial thanks is extended to: Nila Benito, AndreaRedman, and Eddie Redman and Tonie Vogt fortheir contribution to the reprinting and updatingof this pamphlet.A number of moving human portraits by MarthaPerske enhance the pamphlet, and we gratefullyacknowledge this contribution. This artwork isreprinted by permission of Martha Perske, fromtwo books by Robert Perske: Circle of Friends (1988)and New Life in the Neighborhood (1991), publishedby Abinton Press (Nashville, TN).Vitality and humaneness are added to the pamphletby the various individuals who consented to allowpictures or drawings to appear. Your willingnessto help other is very much appreciated.

INTRODUCTIONStress is a state of bodily and mental tensionwhich affects performance. Stress hasbecome part of our hectic everyday lives andis, indeed, a fact of life. It can be an obstacle whichmakes quality of life difficult to achieve for familiesaffected by disability.However, there is some good news about stress: Mild to moderate stress helps motivate peopleto achieve. Each person and family can choose theirattitude about stress: to be a survivor or avictim. Each person and family can also choose to copeby understanding themselves and by using avariety of ways to cope.This educational pamphlet has been written forparents of persons with disabilities, individualswith disabilities, friends and professionals.The three goals of the pamphlet are to: Increase understanding of signs and sources ofstress Provide tips for preventing and coping withstress Suggest support resources to help people copewith stress3

SIGNS OF STRESSStress challenges aperson’s and family’s copingability. High and chronic stress can also turninto a crisis.Signs of stress are warning signals. They show thatpersons feel dissatisfiled, unsafe, or want relief.Which of the following typicalsigns of stress reflect a person youcare about or yourself?Physical Stress Signs absenteeism/tardiness blusing crying drinking headaches rocking running away scratching sicknesssilences slamming doors sleeplessness sloppiness smoking stammering throwing yelling/screamingMental Stress Signs eddisorienteddistracteddullness forgetfulness mistakes/errors poor logic short attention span sloppy work slow thinking talkativeness withdrawalStress affects the whole family.

UNDERSTANDING THE DISABILITY EXPERIENCEPersons and families can cope with stress andhave good lives for themselves if theyunderstand and accept their disabilityexperiences. Each experience is unique, yet somefeatures are common to almost everyone.TECS is an acronym, or memory aid, for elevendynamics that occur in the everyday lives of mostpersons and families affected by disability. TECSrefers to:TEnergy,EmpowermentCSLanguage: Language must be chosen carefullybecause words empower or disempowerindividuals and groups. In particular, there iswidespread agreement to use person-first languageto avoid defining individuals in terms of disabilityor disease. For example, use the term “person witha disability” instead of a “disabled person.”Isolation: Many persons and families experienceisolation and loneliness. Primarily this is becauseof negative attitudes, like fear and hate, andseparation from community life.Time,TransportationEThree other challenges frequently create stress:language, isolation, and developmental transitions.Developmental Transitions: Because the humanexperience changes from childhood to old age,challenges and stress vary over Strengths5

RON: AN EXAMPLEAll 14 of these commonplace dynamicsinteract to challenge the quality of life ofindividuals and families. For example,imagine a young man named Ron and his family.Ron is 13 years old, has moderate mentalretardation and cerebral palsy.Time: Each day Ron needs more time than his peersfor grooming and making decisions.Transportation: It takes Ron longer to walk placesand he depends on others for rides. Transportationis a major daily obstacle for families who live incommunities with poor public transportation.Energy: Hard physical labor and tough mentalwork, like tests, drain Ron’s energy and that of hisparents.Empowerment: Sometimes Ron doesn’tfeel very influential or important,such as when he feels left out andwhen kids tease him. Ron and hisparents feel resentful whendecisions are made without theirinvolvement.Control: Ron loves his parents,but sometimes wishes his momwould not protect him somuch. It would be nice if hisdad weren’t so strict. Ron’sparents struggle daily withdecisions to hold on or let go.Curiosity: Sometimes, Ron and his family wishthey had the same privacy as other families. Forexample, staring and nosy questions make themuncomfortable.6Costs: Ron’s parents worry about costs and howto pay the bills. Sometimes Ron feels like a financialburden. They all dream of winning the lottery.Supports: Ron’s education requires more workpreparation, where he is learning selfdetermination and daily living skills. Ron’s parentshave benefitted from a family education group andrespite services. They are forming a circle ofsupport, so family, friends and close professionalscan do personal futures planning to help Ronachieve a better life.Stress & Stigma: Ron and his family get stressedsometimes because of disapproval. At times, it’slike fear. Kids who call Ron mean names get themstressed out. They feel real fearwhen a big school bully tries tomake him fight or threatens to takehis money.Language: Ron and his family oftenshrink or get mad over languagethat hurts (e.g., “dummy” or“CPkid”) or is unnecessary (e.g.,physically or developmentallychallenged). They get stressedwhenpeoplecannotunderstand Ron’s speech.Isolation: Sometimes Ron andhis parents choose to stay aloneto feel safe, even though theseparation from others can feelunpleasant, hurt self-esteemand increase their loneliness.

RON: AN EXAMPLEDevelopmental Transitions: Stress often reflectsthe normal demands of different age periods.When Ron was starting elementary school hisfamily focused on his work habits, trust, andcooperation. As Ron is a teenager interested indating and paid work, they wish to focus on hissocial skills so he can get along better with otherkids and adults.Strengths: Many strengths have emerged from thedisability experience shared by Ron and his family.These include learning planning skills anddiscipline to better manage time, energy, and costs.Other strengths include enjoying being alone,patience, resourcefulness, assertiveness, humility,thrift, and humor. Ron’s family and extendedfamily seem to be closer, more positive, and caringbecause of coping with disability-relatedchallenges.Parallel Experiences: Ron’s closest naturalsupports, like his immediate family and bestfriends, have similar experiences to Ron’s. Forexample, Ron’s parents feel disability-related stress(e.g., worry about social acceptance) and fear (e.g.,Who will help Ron after we die?). Family andfriends also get mad at persons who act scared orimpatient when Ron is slower to make decisions.Ron’s parents feel stress when they disagree or lackthe patience for long range solutions.7

ADJUSTMENT TO DISABILITY OR LOSSBeing born with or acquiring a disability isalmost always upsetting. Disablementseems to reframe hopes and add uncertaintyand fear.Psychologists think that most individuals withdisabilities experience different ways of adjusting.These ways are sometimes called stages, states, ordynamics. Common adjustment dynamics include:shock, partial acknowledgment, depression,anger, and coping.Adjustment to disability is a life-span process. Aperson’s adjustment changes with time andcircumstances. Over time, there is increasingemphasis on coping skills. Parents, other closefamily members, and individuals with disabilitieshave similar ways of adjusting. The adjustmentprocess is shown in the figure below. Shock is the main feeling upon first learningabout disablement or getting discouraging newsrelated to disability. Much of this shock isemotional. People may feel that “this is unreal” or“this can’t be happening to me” or ask “why me?”People experiencing shock frequently display somedenial, bargaining behavior, and fear related tofacing disability realities and implications. Partial Acceptance is where persons and familiesaccept some of the realities related to disability. Depression and Anger are parallel ways ofemotional hiding. Persons in these stages feelthreatened and choose to protect themselves. Theyturn anger inward on themselves and/or outwardon others. Depression and anger are hard on familymembers, especially persons living together.Persons who are depressed may have self-pity, bepassive, and inefficient. Often, depression islikened to grieving. Very depressed persons feelworthless, helpless, and hopeless.Angry person tend to blame other persons andorganizations. They may lash out over theunfairness of new limitations and adjustments.Anger is often a secondary emotion used to maska true-emotion like guilt or embarrassment. Coping is the stage of adjustment where personsrecognize and accept certain limitations.Acceptance includes an emotional commitment tomake the best possible life for themselves.Most individual and families learn to copeeffectively with disability and adapt to changesdemanded by reality. Individuals and families whoregularly practice coping almost always discoverimportant new strengths that improve the qualityof life.8

DISABILITY AND STRESSEveryone experiences some stress daily, andintense stress periodically, related to crisis ormajor loss. The 43 million Americans withdisabilities, their families, and friends are mostlikely to feel anxiety, fear, confusion, apprehension,frustration, anger, and fatigue. In one word:STRESS.Stress can have three kinds of causes or stressors: person-related stressors disability-related stressors environment-related stressorsPsychologists theorize that adjustment to disability is a complex interaction of coping with thesethree main stressors - person, disability, and environment.PERSON-RELATED STRESSORS: age coping skills ethnicity gender individuality interests motivation personality relationships self-concept/esteemDISABILITY-RELATED STRESSORS: age of onset coping skills health mental ability pain and energy psycho-social development stability of disability visibility of disabilityENVIRONMENT-RELATED STRESSORS: comparative values exclusion/isolation inaccessible buildings or events inadequate accommodations inadequate family support inadequate training inadequate transportation lack of services media coverage medications negative attitudes performance demands and time poor economics treatment interventions unaffordable costs unemployment unwanted adviceThe interaction of the person, disability, and environmental factors can be illustrated. An exampleis that an awkward walking style may cause staring and teasing, which may lead to low self-esteem.9

WAYS TO COPE WITH STRESSIndividuals and families who cope best withstress master a variety of tactics that work wellfor them. Some of the following hints fit everyone and some better suit persons affected by disabilities.Remember, not all of these tactics may be rightfor you. Try some and repeat those that workbest for you. Practice! Don’t just tolerate orsurvive stress. Be active. Take control in reducing your own stress.Short-Term Stress Reduction TacticsShort-term stress reduction tactics only takeseconds, minutes, hours, or days to do. Following are helpful hints to reduce stressquickly.What are the top 5 helpful shor-term hints listedthat help YOU reduce stress? aerobic exercise concentration/focusing cooking craft projects crying dancing daydreaming/fantasizing deep breathing deep muscle relaxation drawing a picture eat/drink something healthy helping others hugging laughter and joking10 meditationmovies and popcornnewspaper therapy(comics, crosswords, Dear Ann/Abby) physical labor prayer press on your temples reading reframing/reconsideration rehearsal singing smiling story telling talk to a friend talking out conflicts teasing/flirting telephone talks time management travel visualization writing (e.g., poem or postcard)

COPING WITH STRESSLong-Term Stress Reduction TacticsBest Practices for Persons with DisabilitiesLRong-term stress reduction tactics are used forweeks, months, or years. Following are helpful hints to reduce stress today and yearsfrom now for individuals and their families.What 5 long-term approaches do you believe bestreduce your stress? advocacy & assertivenessassessment of stress & supportclose relationshipscounseling (individual/group)credentials (certificates, licenses, degrees)educationemploymentempowermentexercising regularlyfamily & friendsfuture planninghealthy life habits (e.g., diet, sleep, moderation)knowledge ng with peersnew knowledgepositive affirmationspositive attitudesrespite/restskill masterysocializingsupport groupstrainingtravel/vacationsvalues to live bywriting/journalingesearch has shown that certain activities orservices are most likely to help individualswith a disability have a higher quality oflife. This includes helping to achieve moreindependence, happiness, connectedness, and lessstress.Which of the following best practices have helpedyou or someone you know? advocacycounselingearly interventionemploymentempowermentfamily involvementfriendshipsinteragency collaborationpeer assistanceself-determination skills training(e.g., decision-making, assertiveness) support resource coordination11

24 PRACTICAL TIPS TO EASE TENSIONThe following information will give you somespecific direction a person can do immediately to reduce stress. Many of these tipswere first suggested by a panel of nine experts whowrote on stress reduction in The Doctors Book ofHome Remedies.Which five tips work best to reduce yourTENSION?1. Adjust Your Attitude: “ . . . the single most important point you can make about stress is that inmost cases it’s not what’s out there that’s the problem, it’s how you react to it” (Dr. Paul J. Rosch,M.D., president of the American Institute of Stress).This wisdom is illustrated by experiences like rollercoaster rides that are shared by a group, but perceived as wonderful or awful by different individuals. Positive, “can-do,” attitudes can change a lifeof stress and discomfort to a life of challenge andexcitement.2. Think About Something Else: Distract yourself! Break the chain of thought that is producingstress by thinking about almost anything else.3. Delay Reacting to Tension: Pause and relax fora few seconds before acting. This will help youfeel more in control and more confident. For instance, count to five and breathe deeply before responding.124. Take a Mental Vacation: Fantasizing can easetension. Visualize yourself lying in warm, fine sandon a beach in the tropics. A cool wind is blowingin off the ocean, and the surf is rolling in quietly inthe background.5. Take a Time-out: Brief time-outs, even secondsor minutes long, can really ease tension by givingyou a chance to relax and regroup. One time-out technique is to look away. Ifyou feel on the spot to act before you’reready, look out a window at a far distantview and relax before responding. Another effective time-out method is to getup and leave, perhaps saying words like“Excuse me, I need a five-minute break” or“Pardon me, while I go to the restroom.”6. Time Someone Else Out: Sometimes brief timeouts help others cool off and get themselves undergood control. Sending children to their room for a5-30 minute time-out is a time-tested behavioralmanagement technique, which also give parentstime for respite and regrouping.7. Talk with a Friend: Heart to heart talk with afriend who truly listens and supports you unconditionally helps you feel understood and valued.Such straight talk can prepare you to talk with persons who are stressor.

24 TIPS CONTINUED8. Repeat Affirmations: Repeating positive beliefstatements reduces stress. Effective affirmationsor positive self-talk does not have to be complicated. Persons calm down after saying words tothemselves, like: “Inch by inch life’s a cinch.”“I’ve done this successfully before.”“I can handle this.”“Cool it. Chill.”“I’m prepared and competent.”“I know more about this than anyone else.”“Change what’s changeable and accept therest.”“My mother always loves me.”9. Recite an Anti-Stress Litany: Stress can strikeanytime, at work, in the bathroom, in the deli atlunchtime, in the car on the way home. To helpyourself when unpleasant thoughts knot themuscles in your neck and tension mounts, recitethe following litany, suggested by stress expert, Dr.Emmitt Miller. Try it just before bedtime and evaluate the effect the next morning. 11. Yell or Cry: A good yell or cry in a private placecan provide a quick release to stored emotions.12. Creative Projects: Doing something you likethat is very practical gets you a tangible product,and takes your mind off of stressors. Water andprune plants, paint a room, mow a lawn, cook agourmet meal, take care of a pet, etc.13. Stretching and Massage: Many people respondto stress with muscle tension. It is especially helpful to massage your own target muscles (e.g., neckor upper back) that get most tense under pressure.14. Press on Your Temples: Massaging nerves inyour temples relaxes muscles - chiefly in your neck.15. Laugh. Use Your Sense of Humor: Childrenlaugh an average of 250 times a day, but adults only15. Let yourself laugh at the ridiculous, smile atthe sublime. Take life seriously, but not yourself.For a lifetime of great free entertainment, learn tolaugh at yourself.“There’s no place I have to go at this moment in time.”“There’s no problem I have to solve at thismoment in time.”“There’s nothing that I have to do at thismoment in time.”At this moment in time, I need to relax.10. Take Several Deep Breaths: The correct wayto breathe is abdominally. Feel your stomach expand as you inhale, and collapse as you exhale.Repeat three times.13

24 TIPS CONTINUED16. Meditation:Any kind of meditation(Zentransceddental, yaga) can produce a relaxationresponse that reduces tension. Dr. Herbert Benson,M.D., of the Harvard University Medical Schoolsuggests the following steps for producing relaxation:20. Exercise: Body motion builds stamina to reduce tension. The best movement is regular aerobic exercise which increased the heart rate. Perform your preferred choice - run, swim, walk,jazzercise, treadmill - at least three times a weekfor at least 20 minutes.1. Pick a focus word or phrase (e.g., “peace,”“calm,” “balance”) th

stress Provide tips for preventing and coping with stress Suggest support resources to help people cope with stress. 4 S tress challenges aperson ’s and family ’s coping ability. High and chronic stress can also turn into a crisis. Signs of

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