Volume 3 Number 2 Spring 2010
A Whole Person Experiencing the Body-Mind Connection
Self Acceptance
It’s OK to be Different
Finding Freedom
From Domestic Abuse
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Insights | Winter 2008
Volume 3 Number 2 Spring 2010
FEATURES
14 This is Much Bigger Than I Am A Broader View on Disability
12 Photo courtesy of HDMG
A Journey Toward Wholeness 12 Re-connecting the Body and Mind
16 Grieving Our Losses
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How to Deal with New Seasons of Ability
19 Changing Your Thoughts To Get a Handle on Stress
21 Trust Your Instincts Freedom from Domestic Abuse
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23 Why Am I Different? A Journey of Self-Acceptance
Departments SBA News..............................................................3
Ask the Expert for Adults.....................................10
Advocacy................................................................5
Everyday People.................................................. 26
Research................................................................ 6
Resource Link......................................................28
Giving.....................................................................7
“B” Healthy Recipes........................................... 29
Ask the Expert for Parents.....................................8
Cover photo provided by Rubinstein Photo
LETTER FROM THE CHAIR
As I began to delve into this issue of Insights, I was reminded of the old adage “time heals all wounds.” Reading all of the advice from the various experts and success stories, I realized that we have to take the time to help ourselves heal those wounds. We don’t just wake up one day and are magically healed from our challenging experiences without a little help from ourselves. I began to think further about how our community views mental health. Do we allow things to pile up in our minds and not release them because we feel it is just part of our fate, or do we self-evaluate along the way so that we don’t become a part of the staggering statistic of Americans suffering from depression and anxiety? While significant milestones have been achieved in the battle for sound mental health, it was not that long ago that people thought it taboo to speak of the weaknesses of the mind. Today we see regular advertisements for depression medications, seek self-help books, embrace pre-dawn infomercials on the latest philosophy to achieve a zen-like state, and are religiously drawn to our favorite clergyman in faithful ceremonies—all with the aim of blanketing our daily life with serenity. We welcome the notion that the mind, body, and spirit can bring us peace, but just how do we get there? Matthew Sanford, a paralyzed yoga instructor, offers a different way for individuals with disabilities to interpret “wholeness.” Through him we learn to look at the mind teaching the body, and the body teaching the mind. If we embrace the idea that our body has a lot to say, then we become more at peace with who we are, and the negative emotion sometimes associated with having a disability begins to fade. As an extension of Mr. Sanford’s views, Dr. Gregory Liptak offers insights into depression and anxiety that can open a dialog some of us have resisted in the past. His tools help to self-evaluate and determine if you or your loved one suffers from these conditions and how to rectify them. I am also encouraged by the perspective of Dr. Allen Johnson. He speaks of the mental process that a person with Spina Bifida goes through as he or she moves from one phase in the life cycle to another. I believe this advice is instrumental in the development of a happy, healthy adult. There are some great publications offered by SBA that address mental health. Encouraging Social Development of the Young Person Living with Spina Bifida and the Health Guide for Adults Living with Spina Bifida are both available at SBA’s Marketplace—www.spinabifidaassociation.org. I hope that you will make the time to look within, and use the advice in this issue as a tool in doing so. Sincerely,
Joyce Jones Chair, Board of Directors
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Insights into Spina Bifida® is a quarterly publication of Spina Bifida Association®. Executive Editor: Amanda Darnley Editor: Brenda Yablonsky Writer: Carole Barnhart Medical Advisor: Timothy Brei, MD Copyright 2010 by SBA. All rights reserved. No endorsement of any products or procedures that appear in the publication are given or implied by the Association. The opinions expressed by writers are not necessarily the views of SBA. To submit articles, letters, or photographs, write to: SBA Insights, 4590 MacArthur Boulevard, NW, Suite 250, Washington, D.C. 20007-4226 or e-mail editor@sbaa.org. SBA Staff: 800-621-3141 Cindy Brownstein, President and Chief Executive Officer Ext. 14, cbrownstein@sbaa.org Sara Struwe, Chief Operating Officer Ext. 12, sstruwe@sbaa.org Sherry Arvin, Information and Referral Coordinator Ext. 35, sarvin@sbaa.org Robin Austin, Communications Specialist Ext. 29, raustin@sbaa.org Glenrae Brown, Staff Accountant Ext. 19, gbrown@sbaa.org Tanya Coogan, Director of Chapter Development Ext. 23, tcoogan@sbaa.org Amanda Darnley, Director of Communications and Marketing Ext. 15, adarnley@sbaa.org Mike Garaffa, Web Intiatives and Development Manager Ext. 22, mgaraffa@sbaa.org Melanie Gaylord, Office Manager/ Administrative Coordinator Ext. 17, mgaylord@sbaa.org Joseph Martin, Controller Ext. 24, jmartin@sbaa.org Christopher D. Vance, Director of Development Ext. 11, cvance@sbaa.org
Stay Abreast of the Latest News Receive additional news updates by e-mail. eInsights, SBA’s quarterly electronic newsletter, provides a wealth of information about resources, research, advocacy, and more. Become a more informed member of the Spina Bifida Community. Visit www.spinabifidaassociation.org today to begin receiving eInsights. This publication is supported in part by Grant/Cooperative Agreement Number U59 DD000318 from CDC. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of CDC.
SBA NEWS National Conference to Kick Off in Cincinnati this June Cincinnati, Ohio, will play host to the 37th Spina Bifida Association (SBA) National Conference June 27 – 30. Each year the conference offers a unique mix of cutting-edge medical information sessions, advice for everyday living, and fun-filled opportunities to socialize—and this year will be no exception. Information on the Conference, as well as online registration, can be found on the 37th National Conference Web site at http://conference.spinabifidaassociation.org. On the site you will find updates on events, sessions, and speakers, along with hotel and flight discount information. As the Conference approaches, check back for more details which will be added as they are available. If you are having trouble financing your Conference excursion, a little creative thinking and legwork might be the answer. Check with your local SBA Chapter—many are offering scholarship opportunities. You may also be able to request funds for this educational event from social service agencies in your area such as Medicaid, Developmental Disabilities agencies, or Job and Family Services agencies.
This year’s generous conference sponsors and exhibitors include: PLATINUM
INVESTOR
GOLD
SILVER
BRONZE
Exhibitors: Advocate Medical Services
Easy Walking, Inc.
AMBUCS/AmTryke
M.C. Mobility Systems & Ability Van Rentals
Bard Medical Division Calmoseptine, Inc. Centers for Disease Control and Prevention Cincinnati Children’s Hospital Colours Wheelchair Coolhubcaps.com Cure Medical Duraline Medical Products, Inc.
MLK Medical MTG, Medical Technologies of Georgia National Center on Physical Activity and Disability Safe Sleep Beds, LLC Sunrise Medical TiLite Insights | Spring 2010
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SBA NEWS
First World Congress Proceedings Now Available
SBA Chapters to Host Spring Walk-N-Roll Events
Last year, SBA held the groundbreaking First World Congress on Spina Bifida Research and Care. As the first international meeting of its kind, this meeting brought together leading health care professionals and researchers in the field of Spina Bifida to review the latest in medical technology, research outcomes, and methods of treatment, as well as to help set an agenda for future work in these areas. Attended by more than 350 international experts from over 30 countries, this event truly served as a landmark event for Spina Bifida prevention and care.
SBA’s new national event, the Walk-N-Roll for Spina Bifida, is building steam this year. Held in three locations during 2009, many additional Chapters will be sponsoring events this year. Walk-N-Rolls to be held this spring and summer include:
The proceedings publication summarizing the talks and abstract-presentations from this unique gathering is now available. To order your copy, visit the SBA Marketplace at www.spinabifidaassociation.org.
Make Plans Now for Summer Fun SBA has recently updated its list of summer camps for kids with Spina Bifida—and the list has grown! Nearly 200 accessible summer camps are now featured. To view the list, visit the SBA Web site, www.spinabifidaassociation.org, and click on Resource Directory on
•M arch 20 – Lacey, WA benefiting the Spina Bifida Association of Washington State • May 9 – Denver, CO benefiting the Spina Bifida Association of Colorado • May 23 – Deadham, MA benefiting the Spina Bifida Association of Massachusetts • July 24 – Fort Worth, TX benefiting the Spina Bifida Association of North Texas As new Walk-N-Roll event dates are determined, they will be added to the national Web site, www.walknrollforsb.org. Don’t miss out on this fun event!
the home page. You can then select the camps option.
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www.spinabifidaassociation.org | 800-621-3141
Jim Gallagher is Director of Fundraising for Spina Bifida Association of Northeastern New York (SBANENY). His 5-year-old daughter Madeline was born with Spina Bifida. For the last three years, SBA of Northeastern New York has been actively seeking funding from state legislators to support their efforts on the local level.
How did you get involved with fundraising for your Chapter, and how did the Chapter begin its pursuit of government funding? My wife and I contacted SBA as soon as we received the diagnosis. We attended our first SBA event three months before Madeline was born. After her birth, I wanted to do what I could to help, and my background in sales led me to the area of fundraising. SBANENY really got on the road to looking for government funding because of a conversation I had with a good friend of mine. I was telling him about the work we were doing and our efforts to raise funding, and he told me there may be state money available for organizations like ours. He is a partner in a lobbying firm, and our conversation led to his firm taking our Chapter on as a pro bono client.
How has the lobbying firm helped you in your quest for funding? This firm has been amazing. They have helped to give us a professional presence by providing folders and presentations, mailings, and follow-up phone calls. They make appointments for us with state legislators, and they make us aware of bills that affect our community so that we can inform our people and they can contact their representatives in Congress and the Senate. We wouldn’t have made the connections we have made without their assistance.
formal “asks” for funding for a specific program—an outreach and awareness effort. We received funding from two assembly people that has helped us with those Chapter programs. This year our major “ask” will be for funding to support a conference for our Chapter. Also, (as of this conversation) we are planning a “lobbying day.” Families from all over Northeastern New York will be meeting with 10 to 12 legislators to tell their stories.
What advice would you offer to Chapters that would like to pursue government funding for their programs? Be persistent! It takes time and effort to make those connections and then to stay in contact. Although we had some significant successes in the first few years, the greatest part of our Chapter’s budget still comes from our own fundraising efforts. I hope that in the future we can grow the portion that comes from government sources, but it takes years to get established.
ADVOCACY
In His Own Words
Use your connections. You may have hundreds of families in your Chapter. Do any of them have connections in state government? Do any have connections with a lobbying firm that you might approach for help? Even if you don’t have those kinds of connections, it is worth the effort to identify some local lobbying firms, get in contact with them, and ask if they will take you as a pro bono client. I hope that our experience in Northeastern New York will be an inspiration to other Chapters, because anything we can do on the local level helps to support the national cause.
What has the process of obtaining government funding looked like for your Chapter? In the first year, our goal was just to be noticed—to educate elected officials on Spina Bifida and let them know what SBANENY was doing. Through the connections we made, we were able to see a bill passed declaring the first Spina Bifida Awareness Day in the state of New York in January 2008. In the second year, we turned our focus to the “soft money” that legislators have available to them. Each legislator receives a certain amount of money from the state that they are free to spend as they wish in their own district. We approached several legislators who represent SBANENY’s coverage area and made
Jim Gallagher with Madeline and her 8-year-old brother PJ.
Insights | Spring 2010
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RESEARCH
Closing in on the Cause Neuroscientists Explore Genetic Basis of Spinal Cord Defects An unexpected discovery in a Johns Hopkins University research lab has opened new avenues for research into the causes of spinal cord defects. Mutations in a gene responsible for the packaging and transport of proteins have been linked with incomplete closure of the spinal cord in laboratory mice. “What I love about this discovery is the total surprise—we never before would have linked defects in the protein-secretion machinery and neural tube closure,” says David Ginty, PhD, Professor of Neuroscience and Howard Hughes Medical Institute Investigator. Dr. Ginty’s lab at the Johns Hopkins University School of Medicine has teamed with colleagues at the University of California, Berkeley, in this landmark work, the original intent of which was to discover new genes that instruct the wiring of the nervous system. In the course of generating random mutations in mice and looking for defects in nervous system development in their offspring, graduate student Janna Merte encountered one mouse embryo in which the spinal cord had failed to close into a tube. The surprise came when the responsible gene was identified as one well known for its role in the process by which newly made proteins are packaged into transport vesicles (membrane-bound sacs) enabling them to move through the biosynthetic pathway and ultimately to the cell surface. The protein-packaging gene, called Sec24b, was first discovered in yeast by Berkeley professor Randy Schekman. Consultation with Schekman led to collaboration of the Johns Hopkins and Berkeley teams. “The advantage of working with mouse genetics,” observes Dr. Ginty, “is that mice have been studied for hundreds of years. We knew of another gene, called Vangl2, which causes an open tube defect remarkably similar to that seen with Sec24b, so we began to wonder if the two genes interact in some way.” The Vangl2 gene is known to code for a protein that influences changes in cell shape that allow a flat sheet of cells to form a cylindrical neural tube during normal development.
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Dr. David Ginty of Johns Hopkins University
Dr. Ginty’s team engineered mice that contained mutations in both the Sec24b and the Vangl2 genes. These doublymutated mice displayed the neural tube defect at a frequency greater than the additive effect of the two separate mutations, indicating that the genes do interact in some way. To explore the nature of the interaction in healthy cells, the Hopkins and Berkeley groups studied the interaction of the two proteins normally produced by the Sec24b gene and the Vangl2 gene. Into tubes containing the Vangl2 protein and cell components, the researchers added either Sec 24b proteins or other related proteins. Only in the tubes containing Sec 24b were the Vangl2 proteins properly packaged into the membrane-bound sacs necessary for successful protein transport and secretion. The interaction of the proteins was further clarified by experiments in which mutated and natural Sec24b proteins were mixed with mutated and natural Vangl2 proteins in various combinations. The results indicated not only that mutated Sec24b caused failure of Vangl2 packaging, but that mutations in the Vangl2 proteins themselves prevented Sec24b from properly packaging Vangl2. “We used to think that the packaging of proteins for delivery to their destinations was a generic kind of process, but these results demonstrate that the different Sec24 proteins control the packaging of particular cargoes, and Sec24b selectively controls packaging of Vangl2.” says Dr. Ginty. “The implication of a protein-packaging gene in the failure of the neural tube to close properly opens the door for new areas of research into the causes of spinal cord defects.”
www.spinabifidaassociation.org | 800-621-3141
GIVING
By Christopher Vance, SBA Director of Development
Top: The Jones family joins with friends to celebrate and raise money for SBA. From left, Joyce Jones, Christine Pepiot, Gary Jones, and his daughter Lisa (seated). Bottom: Lisa Jones and friend Christine Pepiot
On December 31, 2009, history was made. Approximately $100,000 was raised to support the important programs and critical services of Spina Bifida Association (SBA) and Spina Bifida Foundation (SBF). Night of 100 Parties is a fun and unique opportunity for people from all over the country to be involved in raising both support for, and awareness of, Spina Bifida. The genesis of Night of 100 Parties was the Boards of SBA and SBF. Their goals were to enhance our efforts to reach out to more people (even those not affected by Spina Bifida), raise vital funds to support SBA’s programs in an efficient manner, and most importantly, have fun! While many could not host on New Year’s Eve, they found other dates that were convenient for them. In fact, one participant decided to host a holiday party in mid-December. Maria Bournias happened to visit the SBA Web site and saw some information on the fundraiser. “I had been contemplating hosting a housewarming party and thought, why not make it a fundraiser? As a person with Spina Bifida, I wanted to support an organization that is helping tens of thousands of individuals and families. In the end, I raised more than $2,000, and my friends truly appreciated learning more about this birth defect.” Another host, Joyce Jones, had this to say about her experience: “I have never
considered myself to be a fundraiser. In fact, I was always nervous about asking for money. I decided that the Night of 100 Parties sounded like a great way to get my feet wet in the fundraising arena. I was pleasantly surprised—I enjoyed the planning, the parties were fun, and the results were great! I hosted a winetasting party at a local winery. The owners actually gave us the space for free and the band played for free. The second event was a party co-hosted by a dear friend at her home. All together, I raised close to $11,000 for SBA. I now realize that fundraising isn’t scary at all, and I was so glad to have an opportunity to give back to SBA—an organization that has done so much for me and my family.” SBA Medical Director Timothy Brei, MD, wanted to host a party, but unfortunately he couldn’t. “With my schedule, hosting an event at my house would have been difficult. However, I did want to make an impact by supporting SBA. I decided to have a ‘virtual party’—basically, a party where you pay NOT to attend. SBA staff helped me compose a letter to my friends and family and include information on how to donate. That letter raised more than $5,000!”
In 2010, our goal is $150,000. We can get there if people like you help us. Please consider hosting a party—it doesn’t have to be on New Year’s Eve. Some party ideas include: • A Labor Day BBQ • A “sweet 16” birthday party • A mailing to your friends asking them to make a donation (note: the letter is already written…we’ll even help you mail it!) • A Mother’s Day brunch • A Thanksgiving celebration Have fun! Be creative! There are many clever and inexpensive ways to have a great time and benefit a great organization. For more information, please feel free to contact Christopher Vance, Director of Development, at cvance@sbaa.org. Legal Designation for SBA The legal designation for the Spina Bifida Association in your will or trust is the following: The Spina Bifida Association of America, a nonprofit organization with headquarters located in Washington, D.C.
Insights | Spring 2010
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ASK THE EXPERT 8
Ask the Expert: Tips for Parents
Helping Children Value Their Uniqueness By Reji Mathew, PhD In the life of every child who has a disability, there is a moment at which she begins to see that she is different from the children around her in some ways. At what stage in a child’s life does that typically occur?
Reji Mathew, PhD
Insights | Spring 2010
It varies greatly from child to child, and I don’t believe it can be thought of as a single moment or event. It is an issue that a person will revisit throughout life as she enters a new season or faces new experiences or challenges. A child who is not ambulatory will realize early that she cannot do some of the things she sees her friends doing. When the child enters school, a new set of experiences will cause her to realize the differences in fresh ways. When a teen begins dating, other issues arise. It is an ongoing process of self-discovery.
www.spinabifidaassociation.org | 800-621-3141
How can parents help their child to negotiate the process? The child needs a safe place to work out his feelings about the differences he sees. A parent can provide that safe place by engaging in constructive communication. The first step in communicating constructively is always to validate the child’s feelings, whatever they are. They may be based on incorrect information, or on a poor self-image, but those feelings are real and they seem like truth to the child. She will feel safe in processing her thoughts and feelings if they are accepted as real and valid. Once feelings have been validated, a parent can lead the child in balanced thinking. Balanced thinking involves taking into consideration all the facts involved. Yes, a child may be the only one in his class to use a wheelchair, but he is not the only one who enjoys painting pictures, for example. There are others who share his interest in space exploration, or in horses. Help the child to view others as varied human beings. A few of her classmates share her passion for reading poetry, but not all do. We are all different from one another in many ways, but we are similar in many more ways. Look for commonalities and create opportunities where children and teens can connect with others who share their interests. A youth with an interest in politics can find belonging in a teen political action group. Sometimes teachers and school counselors can help students to make those peer group connections.
What can parents do to help their child develop a positive sense of self? A positive sense of self is grounded in a feeling of being accepted and loved unconditionally. It is important that parents express love for their child for who he is, separate from his performance or abilities. Fostering mastery experiences can help to bolster a positive sense of self by guiding a child to set goals and accomplish them. Establishing celebration rituals which recognize steps of progress, no matter how small, can help to keep a child’s growing abilities in her view and remind her that she is a capable person. The “it takes a village” mindset can provide much needed support to both parents and children. Create opportunities for the child to come in contact with positive people who can express delight and interest in him. Their interest and love can reinforce that of parents, and offer the child new relational experiences.
How can parents help children to cultivate hope for the future? Exposing children to positive role models is very important for cultivating hope. Tell stories of others who have effectively negotiated their disabilities to lead successful and fulfilling lives. Let them know
that their dreams are possible, but that they may need to realize them in a different way. Offering such mental images of success can lay a foundation for a child’s dreams and hopes. I like to say that we don’t have to wait for life to get better to feel better. Schedule positive events on a regular basis; once a month, for example, or as often as needed. The Internet offers countless resources of disability-accessible events; sign up for email announcements so you can plan for them. Go out of your comfort zone a bit and contact a prominent person in your community who has a disability. Ask if she would allow your child to visit with her for a mentoring session so your child can speak with her about how she accomplished her goals. Hope is not something you build once. It must be refueled over a lifetime, even into adulthood as new challenges arise. As your child grows older, acknowledge that hope is an actual need, and help him to consciously seek out opportunities to build hope. As a parent, you may have to check your own “hope level.” Raising a child with a disability may be a new experience for you. Make contact with other parents who are going through the same things you are, and with adults who have successfully negotiated the challenges your child may be facing. Even if we do all the “right” things, there will be times when it can be difficult to maintain a sense of hope. At those times, I like to ask myself some practical questions: • What do I need to do to build hope right now in this situation? • What specific steps can I take? • How can I think about this challenge differently? • Is there a role model I can seek out? • Is there a workshop I can take, do I need to learn something new? • With whom can I brainstorm? Giving children practical tools like these questions helps to cultivate an attitude of skill-ability, a mindset that can lead to seeking out new coping strategies as the need arises. When they understand that expanding their coping skills is a life-long, limitless curve, this can be a constant source of hope, and they will be well equipped to deal with whatever challenges lie ahead. Reji Mathew, PhD, is a Psychotherapist/Clinical Instructor at New York University. The main focus of her work is to promote coping skills education for persons with chronic illness and disability. Her clinical expertise is in integrative psychotherapy, particularly cognitivebehavioral skills training. See her Web site at rejimathewwriter.com, showcasing her articles on health, wellness, living well with disability, and links to various resources.
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ASK THE EXPERT
Ask the Expert: Tips for Adults
Depression and Anxiety By Gregory Liptak, MD, MPH How do you tell the difference between normal sadness or nervousness and depression or anxiety that needs treatment? It’s normal to be sad or blue or anxious once in a while. Everyone feels this way. But when depression begins interfering with your life, and it doesn’t go away, you probably need help. Sometimes it’s not so easy. Let’s look at two teenagers and what’s going on in their lives. Annie (not her real name) is a 15-year-old who has lumbarlevel Spina Bifida with shunted hydrocephalus. Her grades have gone down. She is having trouble sleeping and has headaches. Her parents say she’s been irritable lately. What else do we need to know? Does she have friends? Yes, and she still has good relationships with her friends. Her headaches occur mostly in the evenings. She is not vomiting and her vision has not changed. She does say she is not happy at school because some boys are teasing her. But Annie says she is not depressed. She looks a little worried, but she still smiles and jokes around occasionally. She does sound a little depressed, but a CT scan uncovered her real problem: Annie needs a shunt revision. The first step in identifying depression is to rule out physical causes of behavior or mood change. Medical conditions, such as shunt malfunction, a severe infection, and some medications, may cause signs of depression. Once the underlying medical condition is remedied, the signs of depression disappear.
David (not his real name) is an 18-year-old, and like Annie, has been having trouble in school. In fact, he quit college after failing a few courses. His appetite is poor and he has little energy. David spends most of his time watching TV, feeling guilty about failing school. He had friends in high school, but he didn’t know anyone at college. So now he has almost no friends at all. He is starting to have trouble taking care of himself. David isn’t taking care of his skin. He is not bathing. And he is not taking his medications regularly. He doesn’t enjoy things that once made him happy. He doesn’t keep good eye contact and doesn’t joke around the way he used to. These are all signs of depression. After three weeks on an antidepressant, David got better. To find out if a person is depressed, it is crucial to know his history, including health problems, drugs, family history, and current environment. Have relatives had depression? What’s happening at home? Has there been recent stress? Is the patient alone, or does he have lots of friends? Does he find pleasure in things that are normally enjoyable? Does the patient sleep well? Doctors can also learn a lot from working with patients. Does the person look depressed? Does she make eye contact? If a health care provider suspects depression, two screening questions are asked: • During the past month, have you felt down, depressed, or hopeless? • During the past month, have you been bothered by little interest or pleasure in life? If the person answers “yes” to either or both questions, more screening is needed. Sometimes you can learn a lot by simply asking: Are you depressed? Few doctors ask this. If the answer is “yes,” even fewer doctors ask the patient whether he has thought about suicide. These are very important questions to ask. For parents, the most telling question may be: How is this affecting my child? Does she sleep well? How is her appetite? Is she interested in things that used to interest her? Is she able to go to classes, do her homework, study, and concentrate?
What are the symptoms of clinical depression? Everyone has been sad or anxious, but clinical depression is more serious. Symptoms are more severe, last longer, and generally don’t go away on their own. Clinical depression affects daily functioning. People who are clinically depressed don’t do what they used to do. Depression may affect daily activities, motor
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www.spinabifidaassociation.org | 800-621-3141
abilities, appetite, and sleep. Most people with depression have less appetite, but some people, like teens, may eat more, especially sweet or high carbohydrate foods.
feeling tense or afraid, or a sense of dread, panic, or terror. People who are anxious may worry a lot. Anxiety breaks up concentration and tends to result in a focus on oneself.
A common problem for people who are clinically depressed is insomnia. Insomnia is when people have trouble sleeping. It has different forms. Some people can’t get to sleep. Some people wake through the night. Others wake up too early and can’t get back to sleep. People who are depressed may pace, wring their hands, tug at their clothes, and may seem restless all the time. Their speech and thinking may slow down, too, as if they were moving in slow motion. People with depression may also feel physical pain such as headaches or stomachaches.
One type of anxiety disorder is obsessive-compulsive disorder (OCD). Signs include repeated, purposeful behaviors that try to reduce anxiety. Behaviors may include repeated hand washing, counting objects, and needing objects to be arranged in a certain order. Severe OCD interferes with functioning and should be treated.
What are the causes of depression? We know that depression is linked to family history. If one person has depression, his family members are much more likely to have depression at some time. In identical twins this link is clear. If one twin is depressed, the chance of the other twin being depressed is 46 percent. Most experts believe that depression is caused by problems with certain chemicals in the brain. These chemicals, called neurotransmitters, send signals from one nerve to the other. There are many of these chemicals, but researchers have found three that control our moods: • Norepinephrine • Serotonin • Dopamine Depression is more common in women, in part due to hormonal differences. Some studies have shown more cases of depression in people with Spina Bifida. Young people with Spina Bifida are at a higher risk of depressed mood and lower self-worth, and are more likely to think about suicide. People with attention deficit hyperactivity disorder (ADHD) and/or learning disorders have higher rates of depression, too. This may be because of school failures, low self-esteem, or a chemical imbalance in the brain. Depression also is more common among people in northern climates, especially in winter. Stress, especially chronic stress, plays a role in depression. This stress could be from home, school, or work, or from something else like a surgery. Depression is more common following a major personal loss, such as the death of a parent. Low self-esteem is associated with depression, which is one reason why people with Spina Bifida are more likely to be depressed. Other risk factors include decreased social support and isolation. Learned helplessness—where people feel that there is nothing they can do to improve their situations—may contribute to depression. For example, imagine an 8th grader who tries hard to make friends, but is not able to. After a while, she gives up. And even after starting at a new school with all new kids, she doesn’t try because she has learned to be helpless.
What is the relationship between anxiety and depression? If someone is anxious, they’re also much more likely to be depressed. The reverse also is true. Many drugs used to treat depression are used to treat anxiety. Like depression, anxiety runs in families. Signs of anxiety include
What is the treatment for depression and anxiety? There are many ways to treat depression and anxiety. Studies show that exercise can have a great effect. So one thing people can do is be more active. For people in wheelchairs, wheelchair-based sports are a great way to do this. Sports provide a good workout and make it easy to meet people. Horseback riding is fun, too. It stretches the muscles and joints. Drugs and counseling may be needed. Today’s drugs of choice are the SSRIs (selective serotonin reuptake inhibitors), which include Prozac, Paxil, Zoloft, Effexor, and Serzone. Each drug has its own side effects that can be different in each person. Sometimes these side effects can be severe. It is important not to stop the drugs suddenly. Taper off instead. A sudden stop can cause dizziness, fatigue, headache, nausea, and/or insomnia. Counseling (including a type called cognitive-behavioral therapy) can be crucial, especially with anxiety. Counseling also helps if the person has low self-esteem or learned helplessness. Sometimes it’s very helpful for the entire family to receive counseling. Drugs alone won’t improve self-esteem or stop behaviors based on learned helplessness. How long do you treat depression with drugs? It depends. For someone who has mild depression for the first time, treatment usually lasts for two to three months and then the drug is tapered off. For people who have severe depression, troubles at home, low self-esteem, or a hard time taking care of themselves, drugs and counseling are often necessary. Depression is very different for different people, but generally doctors try not to give kids drugs for more than six months. Treatments can last much longer in cases where it is necessary.
Who do I ask for help? If you or someone you know seems to be depressed, talk to a doctor or nurse. Depression and anxiety are treatable. If you try to talk about depression or anxiety and your health care provider doesn’t react the way you think he or she should, find another provider who will listen more. Dr. Liptak is a Professor of Pediatrics and Director of the Center for Behavior, Development, and Genetics at SUNY Upstate Medical University in New York. Dr. Liptak also conducts the quarterly review of research studies for SBA’s online Research Center. Editor’s note: This information does not constitute medical advice for any individual. As specific cases may vary from the general information presented here, SBA advises readers to consult a qualified medical or other professional on an individual basis.
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Toward Wholeness Re-connecting the Body and Mind
Photo provided by Rubinstein Photo
Matthew Sanford emphasizes the mind-body connection in his yoga classes for those with and without disabilities. Insets: Yoga student Kevin Bjorklund with members of his immediate and extended families.
Seated on a mat in a brightly lit yoga studio, Kevin Bjorklund of Minneapolis, Minn., stretches both his mind and his body. Responding to the touch of an assistant, Kevin quiets his mind, allowing himself to connect with the small pulses of energy he can sense flowing up and down his spine. His awareness of that energy has been growing, and will someday lead to awareness of the legs he cannot remember feeling. Injured in an accident at age 3, Kevin has lived most of his 46 years paralyzed from the chest down.
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“I’ve lived most of my life an ‘upper-body person,’” says Kevin. “My lower body was just something I dragged around, never really feeling entirely connected. Through yoga I’ve come to experience myself as a whole person—I don’t view myself as disabled anymore, but as the whole person that I am.” Kevin’s yoga instructor, Matthew Sanford, is uniquely qualified to lead Kevin through his journey toward wholeness. A devastating car accident that took the lives of his father and sister left Matthew similarly paralyzed at the age of 13. “Like Kevin, I was encouraged to disconnect from my lower body, to concern myself with its maintenance only,” Matthew remembers. “After the accident I told the doctors that I could feel a humming, a buzz, in my lower body. They told me it wasn’t real and that it would fade. Thirty-one years later I am helping others to re-discover that energy, that life, in their own bodies.” Photo courtesy of HDMG
For 12 years Matthew believed his well-meaning doctors, at one point feeling that he may as well amputate his legs since they were “useless” to him. But in 1991 he took a leave of absence from the graduate program in which he was studying philosophy. He felt an overwhelming need to focus more attention on taking care of his body. Not long after, he began studying with Jo Zukovich, an Iyengar yoga practitioner. From his very first session, Matthew felt a new energetic awareness that took him by surprise. Jo had no experience working with people with disabilities, but she and Matthew explored the possibilities together.
Body as Teacher “The mind teaches the body, and the body teaches the mind,” Matthew affirms. “We don’t tend to believe the body has much to say, but if we listen, it will tell us that our asymmetrical way of sitting or walking is wearing on our joints. It will help us to discover new ways to do things we thought we couldn’t do. It will lead us to a place of wholeness and mind-body connection that we would have thought impossible.” In the three years that Kevin has worked with Matthew, he has experienced that body teaching. Through his training in yoga, he has shifted his focus from what is wrong with his body, to what works well—what is healthy. And he has become more physically able to contend with the travel required in his job as a product sales consultant for a global company. “The physical benefits of yoga are enormous,” says Matthew. “Just reclaiming what your body feels like in space brings a sense of wholeness.” Many of Matthew’s students have found that re-connecting with the paralyzed parts of them has imparted new abilities. Transfers are easier, balance is improved, and ability to manage pain is enhanced. “Yoga has made me more flexible, stronger,” says one of Matthew’s students. “Before yoga, I didn’t think to use my legs to help me transfer out of my wheelchair. Now I push down on them and transferring is easier.” Another student, a marathon runner before injury left him a quadriplegic, observes, “There’s an incredible feeling you have when you finish a marathon. Through yoga, I’ve felt that way again for the first time since my injury.”
Matthew’s touch helps Kevin to place his limbs in space and experience himself as a whole person.
Emotional and Spiritual Benefits The benefits go beyond the physical. “I am more content,” Kevin says. “More at peace with who I am. Yoga has helped me to put aside the denial, shame, and negative emotion that I associated with my disability. In an adaptive yoga class it takes humility, courage, and vulnerability to accept the help of the volunteers—to allow their touch. But the resulting experience has been hugely rewarding to me.” Many people with a disability feel that their body has betrayed them—let them down in some way. Matthew believes the body will always move toward life. It’s the mind that falters. “Your body is the best home your mind will ever have,” he says. “It’s doing the best it can with the cards it was dealt. It’s the mind that loses faith and struggles to see health and vibrancy in the body.” Though Matthew’s mind has no memory of the accident, his body remembers. When he first began studying yoga, he started having flashbacks. Now he knows exactly how his injuries occurred. “The mind-body relationship is fundamental,” Matthew emphasizes. “We must let the body have its voice. If we can re-establish that mindbody connection, healing is possible even when curing is not.”
Matthew Sanford is the founder of Mind Body Solutions, a public speaker, and author of Waking: A Memoir of Trauma and Transcendence. He teaches both mainstream and adaptive yoga classes in the Minneapolis area. For more information, visit matthewsanford.com and mindbodysolutions.org.
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Taking a Global View on Disability “Carry your cross, don’t drag it!” That’s the advice Rob Hurtekant’s mother constantly gave him as he was growing up a wheelchair user because of Spina Bifida. It took living on another continent for Rob to fully realize that his “cross” or his burden is shared by people around the world.
Rob Hurtekant immerses himself in local life during several visits to South Africa.
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Originally from Dallas, Texas, Rob is a 24-year-old graduate student in African Studies at the University of California, Los Angeles (UCLA). A high school interest in the continent of Africa led him to Georgetown University’s School of Foreign Service, and a six-month stay at the University of Cape Town in South Africa. “It was really a question of where rather than if I was going to study abroad,” says Rob. “I knew I could thrive at the University of Cape Town in part because the school had an Office for Disability Services, and because I found Web sites for wheelchair basketball teams in the area. It was clear that wheelchair users were living fulfilling lives there.” What Rob experienced in Africa changed his perspective on his disability. “I volunteered at Tembalethu School, a school for kids with special education needs near Cape Town,” he remembers. “Kids with physical disabilities were being put into classrooms alongside kids who had mental disabilities, limiting the pace at which they could learn. I saw people who were denied an education at all because the schools were not accessible.” Rob began to see disability as a social phenomenon—“the world’s cross”—because the extent to which individuals cannot realize their potential for lack of a simple ramp into a school building is a weight the world ends up carrying—unnecessarily. As a result of his experiences, Rob has had opportunities to share his vision with those who can make a difference. He participated in a panel discussion at the 2007 Council on International Educational Exchange’s (CIEE) annual conference in Toronto. The panel considered ways to increase the availability of foreign study to people with disabilities. “For me, the encouraging thing about that discussion was that people weren’t asking, ‘Is this possible?’ but ‘How can we make this happen?’” Rob recalls. Rob was named 2007 CIEE Student of the Year for his launch of a volunteer program at Tembalethu School. In 2009 Rob was invited to address the NAFSA: Association of International Educators conference in Los Angeles. NAFSA is an organization that promotes the exchange of students and scholars to and from the United States. “The measure of anyone’s life is
the extent to which they can impact others,” says Rob. “These opportunities to share my experiences arose, and I’m grateful for them.” Never the ‘rabble-rouser’ type, Rob has found a style of advocacy that fits his nature. “I’ve come to define advocacy differently for myself,” he comments. “I don’t need to be confrontational or demanding, but I do need to resolve the tension between complaining about the structures and institutions that aren’t working for me, and finding ways to expand opportunities for myself and for others. I’ve learned from my mom that being more gracious than I feel like being is not a weakness, but a good tactic for beginning a conversation and helping someone to see my point of view and make a change.” Last summer, Rob returned to South Africa for an isiZulu language immersion program funded by a Fulbright-Hays Fellowship from the U.S. Department of Education. He spent several weeks studying at the University of KwaZulu-Natal in Pietermaritzburg, and also lived with two Zulu families, first just outside of a city called Mbali and then in the rural town of Maqongqo. Rob plans to complete his master’s degree in June, and is currently pursuing employment as a State Department Foreign Service Officer as well as other opportunities within the federal government, and in the private sector as a consultant for African affairs. Rob likes to quote a Zulu proverb to explain what motivates him. “Umuntu ngumuntu ngabantu. A person is a person through other people—humanity is relational.”
“The measure of anyone’s life is the extent to which they can impact others. These opportunities to share my experiences arose, and I’m grateful for them.” Rob Hurtekant
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Grieving O ur Losses By Allen F. Johnson, MSW, PhD
As a family therapist and an adult with Spina Bifida, I have counseled many people with physical disabilities and their family members who are grieving over their situations. As an adult with an ever-changing body due to the birth defect, I have experienced the grieving process as well. Grieving by the person with a disability is, I would suggest, an Allen F. Johnson, MSW, PhD
ongoing process. Physical changes that occur throughout life create many problems, all of which need to be grieved through to resolution to make one’s life most acceptable. If a person with Spina Bifida has recovered from or adjusts to these changes physically as much as is possible, the individual and her family may assume healing is over and nothing else needs to be done. In fact, the healing process is just beginning. Healing involves not only physical recovery and adjustment but also emotional, psychological, social, and spiritual as well.
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www.spinabifidaassociation.org | 800-621-3141
In February 2009, as the result of spinal stenosis, I went from walking with braces and a cane to braces and a wheelchair. At 65 years old this has been a major change in my life. So once again I am going through a grieving process, mourning the loss of my mobility. Physical loss, whether it is partial loss or total loss of function, can damage one’s body self image due to being deprived of what one once had. Such a loss leads to a grief or mourning process that either continues to resolution or becomes stagnant. Coinciding with the physical loss causing a grief reaction, there is the loss of dreams and expectations for one’s life. As long as these non-physical losses go unhealed, the results are incalculable. It is critical that the physical and non-physical losses be dealt with holistically or the individual is likely to suffer psychologically by entering a continual state of chronic depression and stress. Choosing recovery and resilience encourages one to not only exist but to move forward as well. Recovery from a loss of physical capacity is filled with trials and obstacles, but as you consistently work through the challenges that occur, inner peace about the loss is possible. Although it is a struggle to cope with losses, it is best to deal with them by developing a coping strategy and sticking with it. It will not make the loss disappear, but it can allow you to live with it. Coping with grief requires the use of outer and inner resources. Outer or environmental resources to cope with loss include the help of a partner, friends, and family members, a religious leader, or a psychotherapist. Inner resources include the use of one’s talents, such as musical abilities or an interest in art or writing to mention but a few. An example of a holistic self-care plan to cope with grief includes addressing the issue: mentally by journaling your thoughts and feelings, emotionally by talking with a counselor or confidante, physically by lifting weights, and spiritually by praying or meditating.
“As individuals walk through the grieving process to readjustment and hope, they realize that out of suffering comes renewed strength to carry on. They thereby become emotionally freer to establish an adaptive lifestyle, learn compensatory body movements, and accept the concept of being a whole personality with body modifications.” Allen F. Johnson, MSW, PhD
Since Spina Bifida occurs in childhood, children must grieve their losses as well. They see the bodies of their friends and siblings and compare those bodies to their own. This comparison often causes grief. Children with disabilities must constantly cope with their feelings of loss because of their impaired body image. Children, adolescents, and adults with disabilities often get stuck physically, mentally, emotionally, and spiritually. They display negative emotional reactions such as self-pity, self-recrimination, and may even contemplate suicide. These feelings must be worked through in the grieving process for the individual and his family members to adapt well to the disability and its manifestations. As individuals walk through the grieving process to readjustment and hope, they realize that out of suffering comes renewed strength to carry on. They thereby become emotionally freer to establish an adaptive life-style, learn compensatory body movements, and accept the concept of being a whole personality with body modifications. Finally, when people with Spina Bifida grieve their losses through to acceptance, then they acquire hope and the ability to pick their lives up again after each loss. Allen F. Johnson, MSW, PhD, an adult born with Spina Bifida, is a psychotherapist in private practice at the Auburn Family Institute in Auburn, Mass.
Resources Dr. Johnson suggests these resources to further assist you in working through the grieving process: Cleland, Max. Strong at the Broken Places. Lincoln, VA: Chosen Books, 1980. Ericsson, Stephanie. Companion through the Darkness: Inner Dialogues on Grief. New York: Harper–Collins Publishers, 1993. Myss, Caroline. Invisible Acts of Power: Personal Choices that Create Miracles. New York: The Free Press, 2004. Register, Cheri. The Chronic Illness Experience. New York: The Free Press, 1987. Ritter, Rick. Coping with Physical Loss and Disability: A Workbook. Ann Arbor, MI: Loving Healing Press, 2006. Tada, Joni E. Joni: An Unforgettable Story. Grand Rapids: MI: Zondervan, 2001. Yancey, Philip. Where is God When it Hurts? Grand Rapids, MI: Zondervan, 1990.
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Living with Spina Bifida, or having a family member with Spina Bifida can be challenging as well as seem very stressful. However, research has proven many times over that it is not the actual events or circumstances in our lives that cause us stress, but rather our perception of those events or circumstances that determine our stress level. I too was born with Spina Bifida (myelomeningocele), and know very well the daily challenges that go along with living with a disability. However, along this journey of living my life with Spina Bifida I discovered early on (through the wisdom of my parents) that although we may not get to choose the circumstances in our lives, we always get to choose our attitude and our perception of and response to those circumstances. Knowing this from an early age has enabled me to live a life with less stress and more joy. Here are my top five ways to change your thinking in order to change your stress level.
Start your day well. Take a moment and think
about your very first thoughts this morning as you were waking up. Were your thoughts negative or positive? Believe it or not, the thoughts you think when you first wake up in the morning actually create the atmosphere and tone for the rest of your day and funnel down to everyone with whom you come into contact. A great tip for getting your day started in the right frame of mind is to ask yourself, “What do I want from my day?” Shifting your thinking to what you want from your day rather than focusing on what you are worrying about will make your day more productive and much more enjoyable.
Practice gratitude. It is so easy to take many things
in life for granted, including our abilities to see, smell, hear, think, and talk. When I was very young and growing up with Spina Bifida, my parents were wonderful about keeping me focused on what my abilities were, rather than what I couldn’t do. Therefore I grew up being very thankful for the health I did have, rather than being resentful or depressed over what I didn’t have. One of the most powerful ways to practice an attitude of gratitude is to make an appreciation or gratitude list of all things for which we can be grateful. Updating your list often and adding things great and small can help keep you in a constant state of appreciation for what you do have in your life.
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Discover your priorities.
We all are given 1,440 minutes per day to spend however we choose. It can become very easy to spend much of our lives not doing the things that matter the most to us. Knowing what matters most to you in life and living a life in alignment with those values creates a life of joy despite challenging circumstances. To discover your priorities, make a list of the 10 things that are most important to you and compare that list to your schedule or daily activities to see if you are living a life guided by what matters most to you. Dr. Christine Northrup, author on women’s health and wellness, says it is vital that we incorporate five things that bring us joy into every week. Not only does this increase the quality of our lives, but it also has been proven to have many health benefits.
Thought-stop and reframe.
Stress experts have proven that what we think about the most is what we experience in life, so if our thoughts are primarily negative, we are going to have negative experiences. Science has proven that we think 60,000 thoughts per day, and 90 percent of those thoughts are the same ones we had yesterday! Are you spending your life rehearsing disappointments and painful experiences? The two best ways to transform your thinking are “thought-stopping” and “reframing.” Thought-stopping is exactly that—it is stopping a negative thought as soon as you think it and immediately replacing it with something positive. Reframing is simply choosing to see the circumstances in your life from a different perspective, or giving your situation a new meaning. Reframing is like putting an old picture in a new picture frame. It makes the entire picture look different.
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Monitor your self-talk.
The words we say to ourselves carry a tremendous amount of power in the quality of our lives and in the way we think about ourselves. According to the Minirth-Meier Clinic’s book, Worry-Free Living, we carry on internal conversations with ourselves at a rate of 1,300 words per minute. We are not even aware of most of these conversations, but this continuous stream of communication determines what we do, what we say out loud, and how we feel about ourselves and others, which can greatly affect our stress levels and our response to life’s circumstances. Our language really does color our experiences. We truly can limit our own potential and erode our own self-esteem just by the words we say to ourselves. Here is one example: If you say to yourself, “I just can’t handle this,” compared to “This is only a challenge,” it will most likely be so. That is because our subconscious mind tends to believe the
thoughts it hears. So, using self-talk that is positive rather than negative can not only change your stress level, it can also increase your productivity and even improve your health, as research has proven. My hope is that this information will inspire you to a new way of viewing and thinking about your life, so that you may live a life of freedom and your highest potential, even in the midst of the experience of Spina Bifida. Shauna Bruce-Hamburger is an adult living with Spina Bifida from Alliance, Neb. She is a life-coach who works with individuals to help free them of whatever is holding them back from living their best lives—from stress management and healthy living to overcoming adversity. She holds a bachelor’s degree in wellness management and is a Certified Health Minister as well as a Certified Conscious Body Coach. For more information visit www.divinepotential.com.
www.spinabifidaassociation.org | 800-621-3141
Domestic violence is a sad reality for women as well as men, for people with and without disabilities. Below is a letter Insights received from Joanne Carron, a woman with Spina Bifida who courageously shares her experience in the hopes of helping others.
“The most important thing I want to share is to please, please trust your instincts. Listen to that little voice in the back of your mind whispering to you, screaming at you— something is not right!” Joanne Carron
e was my high school sweetheart. Shy, unassuming, big doe eyes, and oh so thrilled and surprised that a girl would be interested in him. At least that’s the way he presented himself. I never imagined he would become my worst nightmare. I stayed for five years. He was my knight in shining armor, the one who would save me from the situation I was living in. At least that is what I thought he would be. I never imagined that the second man I loved and trusted would become the second abuser in my life. I stayed for 5 ½ years. You may be thinking to yourself, “Why did she stay?” or “I would never put up with abuse.” Well, I lived it and can say from experience that one can never judge a person who doesn’t leave immediately. Abuse is so insidious, it can start with just a comment. Slowly but surely, as they gain your trust, play on your insecurities, slowly isolate you from friends and families, abusers can convince their victims of almost anything. As a woman with Spina Bifida and a survivor of two abusive relationships—the first more physical and the second more mental and emotional—I can say with confidence that it doesn’t have to be the only life a victim has to
know. No matter how bad it seems—that no one knows, that no one will understand—you can get out. I feel it is crucial that people become more educated and aware of the fact that abuse happens, and yes, it happens to individuals with disabilities. Please know also, the types of things the abuser can do to someone who is more vulnerable and reliant on the abuser can be very different from the experience of victims without a disability. Many people with a disability feel that they “can’t do any better,” “I’m lucky to have a partner,” or “I deserve it.” Nothing could be further from the truth. Some of the forms abuse can take are medications being taken away, being left alone without access to a wheelchair, or being left in a vehicle on the side of the road without hand controls (with the threat of being left there with your chair in the trunk). Emotional and verbal abuse can include being mocked for incontinence, mocked for abuse from previous relationships, or affairs with other women. None of these are things we as people with disabilities have to tolerate! After getting out in my own time, when I was ready, I went to counseling, read about
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signs and effects of domestic violence, and read every self-help book I could get my hands on. I learned about who I am now—myself as a survivor. But that was after the fact. I implore those who are in an abusive relationship to please get help. Work on getting out. For those of you who are dating, thinking about dating, or have a family member in a relationship, educate yourself on the signs of abuse. The most important thing I want to share is to please, please trust your instincts. Listen to that little voice in the back of your mind whispering to you, screaming at you—something is not right!
to ask them about it. Linda suggests, “Let the person know that you care about her. If she needs to talk, to get away, you are there for her. Give her your work and cell phone numbers so she can reach you any time of day.” Many times a victim may acknowledge abuse but is not prepared to leave. “While you can’t force someone to leave or take action, you can assure him that your door is always open. Keep the lines of communication open,” Linda says. In some cases, it may be wise to make a plan for getting help in an emergency, such as agreeing on a codeword that a friend knows to interpret as “Call 911.”
I wish I had.
Accessing Community Resources
Signs of Abuse
There are resources available for abused and battered men and women. There is a National Domestic Violence Hotline (800-799-7233, www.ndvh.org). Many cities also have a domestic violence hotline or a domestic violence liaison officer through the local police station. These resources can help you in various ways: obtaining a list of attorneys, assisting with getting locks changed, and filling out an order of protection form. Many cities also have shelters for individuals or families who need temporary support and housing, however it is important to ask if these facilities are accessible. Check to see if common areas are easily accessible to people using wheelchairs, doorways are wide enough, and bathrooms are able to accommodate someone with a physical disability.
Linda Miller is a domestic violence survivor and is currently the certified domestic violence advocate who consults with many victims of domestic violence through Schwab Rehabilitation Hospital in Chicago and its Disability Resource Center. The examples of abuse cited in Joanne’s letter are ones Linda hears often. “It can be hard to pinpoint warning signs since they can depend upon a person’s limitations,” she said. For instance, a person with visual impairments may encounter abuse when her spouse or care provider mistreats her helper dog or takes away her television— one of her primary gateways to the outside world. “Abusers often mistreat victims in subtle ways,” says Linda, who uses a wheelchair as a result of childhood polio. She was married to her first husband for three years, and the abuse escalated over time. He would often apologize after an abusive event, but later the apologies stopped and it became “her fault” for mouthing off or talking back to him, which could result in choking, slapping, or being kept out of her wheelchair for hours. “I depended on him for transportation to work,” she says, “and he would use that against me—refuse to take me or make me late on purpose.” Domestic violence—also called intimate partner abuse, intimate partner violence, and domestic abuse—takes many forms. In her work with other individuals with disabilities, Linda sees abuse that is physical, emotional, and sexual. It can also involve neglect. Examples of abuse can range from medications being taken away or sold to personal care attendants who steal money and jewelry, or who put someone to bed early and don’t assist the person with getting out of bed and dressed until late the next morning. Sexual abuse can range from demanding sex for help, or taking advantage of a person with limitations. And remember, abuse can happen to men. About 30 percent of Linda’s clients are men who encounter all forms of abuse.
“You deserve to live free of fear, and life can go on,” says Linda, who is married to her second husband of 23 years and has a son. “You can make that happen by taking steps to protect yourself and reaching out for help.”
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How to Help “Don’t be afraid to ask someone if he needs help,” says Linda. When her friends and family took notice of her black eye, they assumed she fell from a chair. “No one asked,” she said. Today she works with many health care providers and others who see the signs but find it difficult to believe that someone would abuse or hurt someone with a disability—and therefore dismiss the signs and assume it happened some other way. “People don’t like to think that someone would hurt a puppy, but it happens,” Linda said. “And the reality is there are people that hurt people with disabilities.”
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How do you broach the subject with someone you are concerned about? According to Linda, many victims acknowledge that while they weren’t able to verbalize their situation to others, they were desperately wanting someone
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A Journey of Self Acceptance There’s always a moment in a child’s life when he realizes he is different, but for a child with Spina Bifida, this realization can be more profound. By Jamie Smith I remember once asking my mom if it were possible that everyone else in the world who could walk without leg braces were the ones who were “not normal” and if my being “messed up” was actually more normal.
Jamie Smith makes a new friend.
Many moms might have lied to help boost my self-esteem in the moment, but my mom was wise enough to tell me the truth. She gently told me that no, I was the one who was different but it was OK. It was OK because I was just as special as the other kids who could run, walk straight, and do many other things I couldn’t do. This allowed me to start accepting myself for who I was, and focus on developing my strengths and accepting my differences. As I transitioned into different life stages, the feelings of being different would resurface. I found that after the initial “major” acceptance at age 8 or 9, there were moments along the way when I needed a little reminding. I remember my mom sharing the first verse of the Serenity Prayer: “God, grant me the serenity to accept the things I cannot change; the courage to change the things I can; and the wisdom to know the difference.” I couldn’t change the Spina Bifida, so I learned to focus on what I could change. As I look back on those days, I see something else that helped me accept myself and my disability— I was exposed to a variety of people. I was around other children and some adults with Spina Bifida through our local Spina Bifida Association Chapter.
I saw that I wasn’t alone, and that if they could be different, then so could I. I was also around people with disabilities that were different from my own, including people with Down syndrome and spinal cord injury. It wasn’t so much that my parents were trying to purposefully expose me to certain people; these folks were just a part of my life through church, and I was taught to accept them as they accepted me. I was not isolated to be around only people with disabilities—quite the opposite. While I admit I struggled with relationships among my peers as a child and teenager, I had many adult friends who accepted me for who I was and helped me accept, not gloss over, my disability and differences. During my growing up years, I learned from my parents the importance of sharing my story with other families who have a child with Spina Bifida. My parents would often visit a couple who had a new baby with Spina Bifida and bring me along to share about life with the birth defect. Now that I’m an adult, I’ve tried to do something similar. I was recently able to spend time with a special young girl from a nearby city who was struggling because she was feeling the differences Spina Bifida created more than she had ever felt them before. I met with her and her mother, who had told her all the
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same messages that I told her, but somehow coming from me made them more believable. The child was able to get some reassurance and we both made a new buddy. I asked Heather, the girl’s mother, to participate in this article in an effort to help other parents who are facing a similar dilemma with their children.
How old was your daughter when she first started realizing her differences, and how did you respond initially? It was around first grade. She would mention being frustrated about having to wear braces, not having cute flip-flops, having therapy multiple times a week, things like that. In the beginning, I didn’t want her to feel different so I would just try to minimize the issue by saying things like, “Your braces are hardly noticeable. You’ve got other cute shoes. But isn’t therapy fun?” By about third grade, she recognized that her friends were able to easily do things that were a real struggle for her, and she also was realizing the permanence of her condition. She wasn’t just going to “outgrow” Spina Bifida. At that point, she became more emotional about it, and my answers weren’t working anymore. I decided that the process had turned a corner and I needed to stop being dismissive. I was reminded of when we first received her diagnosis. The people who minimized it with an “it’ll all work out” comment weren’t very helpful. I needed friends who would validate my feelings and be supportive as I worked through them. And now, I realized it was time for me to do that for my daughter.
How did it make you feel as a parent to see her go through that realization? My first reaction was heartbreak. It was very hard to watch her sincerely cry about her limitations. She didn’t think they were fair, and really, neither did I. I would just try to be sympathetic and listen, and then I’d always have to leave the room and cry when the conversation was over. I eventually realized we were entering a new chapter of her life called “self-awareness.” And just like any other new chapter, I needed to educate myself on this new leg of the journey. I knew that I wouldn’t be able to fix it, so I needed to figure out how to help her handle it. But I couldn’t see clearly how to do it. I would tell her that the path wasn’t a bad path, just a different one and that differences are OK. But I did not grow up with a disability, so I couldn’t really understand her feelings or speak credibly about working through them. I felt like a person on land trying to raise a mermaid. What did I know about a mermaid’s life? How could I possibly help her or teach her? Where could I learn these things?
How did you approach this new chapter in your daughter’s life? First, I always prayed for guidance before having these conversations. I needed wisdom and the right words, because these were very heavy conversations that would potentially determine how she felt about herself and her disability.
Then as I said, I switched from dismissing or minimizing her frustrations to validating them. I tried to listen to her and not say very much at all besides, “I’m so sorry,” “I love you exactly the way you are,” and “I’m here to help you in any way you need me.” Also, I intentionally looked for activities in which she could be successful. I thought this could boost her self-esteem and connect her with peers in stronger friendships. Putting her in art classes and violin lessons helped a lot! So what if she couldn’t do a cartwheel? Her art is on display in our local library! And then one night following an episode of sadness, she told me that one of the hardest parts was that she felt alone in her diagnosis—no one else in her family had it, nor did any of her classmates. At that moment, I remembered hearing about an adult woman with Spina Bifida (Jamie) who was a writer in our area. (I actually came across an article by her in Insights into Spina Bifida.) I asked my daughter if she would like to meet an adult with Spina Bifida, and she was eager to do so. Jamie agreed to meet us for dinner one evening. That dinner was a big help, and I think the beginning of a great friendship for my daughter. Jamie brought a scrapbook of her childhood, which was a wonderful idea. Every child likes to look at pictures, and they prompted a lot of the conversation. My daughter got to see pictures of Jamie growing up, having surgeries, playing with friends, her childhood pets, being involved in high school clubs. I know every person is on a different path, but I think when my daughter looked at Jamie’s scrapbook she saw the potential of a joyful life surrounded by supportive friends and family. At one point that night, my daughter asked Jamie how she dealt with being different from the rest of her family. Jamie explained to her how everyone has different strengths and weaknesses, and those differences are OK. When we left that night, I asked my daughter if meeting Jamie had helped. She said, “Yes, because she told me it’s OK to be different.” It struck me that I had been telling her the same thing all along, but it was different coming from Jamie. She had a credibility that I would never have. I think my daughter will likely want Jamie to remain a special friend throughout her life. I have a feeling she’ll talk to Jamie about things that I don’t know much about. But I feel good about that. What better than for my mermaid to have another mermaid in her life, showing her how things are done? Jamie Smith, a 31-year-old freelance writer, is an adult with Spina Bifida who lives in Arkansas with her husband.
Heather offers this advice to parents whose children are dealing with acceptance issues: • Be sensitive and realize there are times when you need to be strong and other times when you need to cry with your child. • It’s important to validate her feelings—listen! • Get your child involved in activities with her peers where she can be successful. • Connect her with other people who have Spina Bifida so she doesn’t feel so alone. • You can never say “I love you” too much, or give too many hugs and kisses!
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Insights | Spring 2010
www.spinabifidaassociation.org | 800-621-3141
Everyday PEOPLE
Everyday People Think your life is hectic? Meet Kim Beedy from Genoa, Col. An adult with Spina Bifida, this mother of four stays on the go caring for her four children (one of whom, Hannah, has Spina Bifida) and helps to look after the family’s 100-year-old plantation and farm. What’s her secret to happiness and good mental health?
Carving Out Some “Me” Time When I have the time, I love to read and do crafts. Last year Hannah and I made bracelets to raise money to attend Spina Bifida Association’s annual Kids!Camp. We sold the bracelets at football and basketball games, and at my friend’s hair salon. We raised about $1,000, and Hannah got to attend Kids!Camp for the second time. I also enjoy going to the theater every now and then, or having “movie night” at home.
Family Truthfully, it’s hard to spend much time together as family during the school year. Our oldest is very involved in sports and so the weekends are filled with going to games, and nights with practices. The kids go to school from 8 to 4 and don’t get home from the bus until around 5 p.m. each night. That half-hour at night when we’re all home together (after homework and baths) is special to me. On the farm we raise calves that we sell each January, and then we are calving out again in March. We grow sunflowers, corn, and wheat. Summer is harvest time, and the entire family spends lots of time together then! We all pitch in. Hannah was very excited this year—she got to help her dad drive the combine (although her feet didn’t quite reach the pedal)! Sundays are the most special days of the week for us. Our faith is very strong as a family, so it is important to us to go to church. Then, we come home and just spend time doing “whatever“ together!
Community Support Hannah is the only person in her school system with Spina Bifida. We are very fortunate and blessed with a wonderful school and community. My husband and I were raised here, and so a lot of people are familiar with our family. They hadn’t heard of Spina Bifida until Hannah came along though. She has never been treated differently at school, and gets a lot of support, including the use of a private bathroom at school.
Our Spina Bifida My mother didn’t have an ultrasound during her pregnancy, and she found out I had Spina Bifida after I was born. She was not given much information about what to expect. For instance, she didn’t know there would be some problems when it came time for potty training! When I was pregnant with my first child, I was misinformed and was told Spina Bifida wasn’t genetic. Although I did not take folic acid supplements, we had a healthy baby boy. Before Hannah was born, I was advised to take 400 micrograms of folic acid because we had miscarried twins. We found out at eight months that Hannah had a lesion. After Hannah, I received proper medical advice and was advised to increase to 4,000 micrograms of folic acid (the recommended amount for a woman who has Spina Bifida). Our son was 7 when Hannah was having many of her surgeries. He had us (mom and dad) for all those years to himself, and now he had a sister who required a lot of our attention and time away from home. One thing that helped was taking him to Kids!Camp.
Good Medical Care Hannah and I are both lucky. I have not had any major problems related to my Spina Bifida, although when I was pregnant with Coltyn (my oldest), I had so many bladder infections it damaged one of my kidneys. All of Hannah’s surgeries occurred before she started school, so with the exception of a urinary tract infection last year, she hasn’t missed much school. We have a hospital nearby, but the nearest Spina Bifida Clinic is in Denver, about 1 ½ hours away. We’re blessed with a great local doctor. He has done everything he can to learn about Spina Bifida, and he consults with the neurosurgeon and urologist in Denver whenever something comes up. My husband Gary used to be a massage therapist so he knows a lot about the body and helps Hannah do her therapy at home.
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Insights | Spring 2010
Hannah demonstrates her sheep shearing skills as part of a project with her local 4-H.
www.spinabifidaassociation.org | 800-621-3141
Spending time with other kids who had siblings with Spina Bifida helped him deal with some of his questions and helped him learn more about Spina Bifida. It also benefitted him by helping him to realize that our family is lucky in that our Spina Bifida is not as severe as what many other families have encountered. Today Hannah is in the top five in her class, and she loves to be active! Horseback riding is one of her favorite things to do, along with cooking and sewing. This year she is participating in the 4-H sheep program, and trying her hand at piano and ceramics. In the past she has played volleyball, basketball, and cheerleading. She constantly amazes people. Her teachers tell us every year they wish they could have an entire room full of students just like her. She is always smiling no matter how awful she may feel, and she encourages everyone to do their best. We have tried to make her as independent as she possibly can be. She never says the words “I can’t.” She just does! It may not be the most perfect, or the fastest, but she does it, and she is successful at whatever she has to undertake. I remember the nurse coordinator’s reaction when she found out Hannah was cathing herself at age 4 ½. She told Hannah she wanted to make her a spokesperson for independence!
Gary, Kim, Coltyn, Hanna
h, Paige, and Lance Bee
dy
Insights | Spring 2010
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RESOURCE LINK
SBA ListServs A recurrent theme in this issue of Insights into Spina Bifida—which focuses on mental health—has been the importance of maintaining healthy interpersonal relationships. can post comments and questions by email. It’s an ongoing virtual conversation among a community of people with shared interests. The three SBA ListServs have more than 1,000 users. Imagine being able to compare notes with other parents when working through the complexities of a new bowel program with your child. On the SB Parents ListServ, parents can share their experiences with catheters, diets, braces, wheelchairs—even the learning and emotional issues their children might encounter. Parents waiting for test results or guiding their child through recovery from surgery have a supportive community of people who have been where they are. Just knowing you’re not alone is a great help when facing uncertainty.
As graduate student Rob Hurtekant observed, “A person is a person through other people—humanity is relational.” (See page 14.) Dr. Reji Mathew has cited the concept of helping our children to find friends with whom they can share interests as a way to build a sense of their uniqueness and value (see page 8). Dr. Allen Johnson spoke of the support we receive from “outer resources” such as family members, friends, and others in our community, and the role that support plays in negotiating losses in life (see page 16). Jamie Smith shared the beautiful story of a young girl who journeyed toward self-acceptance by finding a mentor who could understand her feelings about her disability as few others could (see page 23).
On the Youth and Adult Alliance (YAA) ListServ, topics of discussion might include accessibility and transportation, housing, insurance, or employment…or more personal issues such as dating, making friends, or achieving independence. The SBA Occulta ListServ provides a meeting place for those who deal with concerns and issues that are specific to those with SB Occulta. It’s easy to participate in SBA ListServs. Simply visit www. spinabifidaassociation.org, and under the “Programs/Services” tab, choose “Quality of Life” and then “eCommunities.” There you’ll find instructions on how to join, as well as helpful tips on ListServ etiquette.
Spina Bifida Association (SBA) has long held the value of connecting people across the country and giving them a place to come together and ask questions, gain support—simply do life together. “Spina Bifida can be a complicated condition, affecting many aspects of a person’s life,” says Cindy Brownstein, President and CEO of SBA. “The support of others who are facing challenges similar to yours is incalculable. That is why SBA launched our ListServs nearly five years ago.” SBA offers three ListServs to parents of children with Spina Bifida, adults with Spina Bifida, and those with Spina Bifida Occulta. A ListServ is an electronic gathering to which people
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Insights | Spring 2010
www.spinabifidaassociation.org | 800-621-3141
Ingredients: 1 lb. asparagus, thick spears preferred for roasting 1
T olive oil
Sea salt and fresh ground black pepper to taste
Sauce: (Recipe makes enough sauce for several pounds of asparagus, but have fun thinking of other things it would taste great with.) 1/4 cup well-stirred Tahini (sesame seed paste) 1/4 cup warm water 2
T fresh squeezed lemon juice
2
tsp. agave nectar, preferably amber (can also use sugar or Splenda)
1/2 tsp. ground garlic puree from a jar (or use fresh garlic and grind in mortar and pestle) 2
tsp. soy sauce (I use Tamari)
2 T peanut butter (I use natural low-sugar peanut butter for South Beach Diet)
Directions: Preheat oven to 425 F. Lightly spray a roasting pan with olive oil or non-stick spray. Be sure asparagus is washed, then cut off the lower woody ends (usually only a few inches, snap one to see.) Cut asparagus into diagonal-sliced pieces about 2 inches long. Put asparagus in plastic bowl and toss with olive oil, salt, and pepper. Arrange in single layer on baking sheet and roast, turning once or twice, until asparagus is starting to slightly shrivel and brown and is still a little crisp in the center, about 15 minutes.
“B” HEALTHY RECIPES
Roasted Asparagus with Creamy Tahini-Peanut Dipping Sauce
While asparagus roasts, combine tahini, warm water, lemon juice, agave nectar, garlic, soy sauce, and peanut butter in food processor, blender, or bowl attachment of an immersion blender. (If you use an immersion blender or blender, hold the lid down very tightly! I learned this the hard way.) Blend until ingredients are well combined. Serve asparagus hot with sauce on the side for each person to dip asparagus into. (Makes 3-4 servings. Sauce recipe adapted slightly from Chicken and Quickly Roasted Asparagus with Tahini Sauce which was adapted from Epicurious.com.) Recipe reprinted permission of Kalyn’s Kitchen http://kalynskitchen.blogspot.com.
Folic acid, a water-soluble B vitamin, helps your body to build healthy cells. Studies have shown that for women of childbearing age, taking 400 micrograms of folic acid every day can reduce the risk of having a birth affected by a neural tube defect, such as Spina Bifida, by up to 70%. In each issue of Insights, SBA includes a delicious recipe that is also high in folic acid. For more recipes, visit www.spinabifidaassociation.org. Insights | Spring 2010
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SBA is proud to announce its
37th National Conference to be held in
Cincinnati, Ohio June 27 – 30, 2010 Visit http://conference.spinabifidaassociation.org for more information or to register!