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Reprinted in part with permission from DB-Link
By Kate Moss, Education Specialist, Texas Deafblind Outreach

Editor's Note: In September of 2001, DB-Link published a book, Introduction to Sexuality Education for Individuals Who Are Deaf-Bind and Significantly Developmentally Delayed, that was written by Robbie Blaha and Kate Moss from the Texas Deafblind Outreach Project. What follows is an excerpt of Chapter 8, Sexual Health Care from this book. The entire book is available free from DB-Link in a PDF file version that can be downloaded from their website at http://www.tr.wou.edu/dblink/pdf/sex-ed.pdf. If you do not have internet access, you can request a copy in print from DB-Link by calling, writing, or emailing to:

DB-LINK Teaching Research
345 N. Monmouth Ave.
Monmouth, OR 97361
Voice: 800 - 438 - 9376, TTY: 800 - 854 - 7013, This email address is being protected from spambots. You need JavaScript enabled to view it.

Issues for the Child or Youth with Deafblindness

  • Certain etiologies may have implications for sexual health.
  • A child with deafblindness and significant developmental delays may not be able to successfully communicate problems about his or her health.
  • These individuals may be uncooperative about participating in medical procedures and exams.
  • Sexual contacts with others may lead to pregnancy or sexual transmitted disease.

Issues for Parents and Professionals

  • Parents and professionals may be focused on more demanding medical needs.
  • Like the rest of society, parents and professionals may view the child or young adult as asexual.
  • Families may look to professionals for help in addressing sexual health issues. (Editor's note: Often these professionals, even medical professionals, may not know what to suggest for the child who is deafblind with developmental delays.)
  • Education and rehabilitation professionals may feel unprepared to address these issues.
  • Both families and educational or rehabilitation professionals may be unaware of the laws related to medical consent, birth control, surgical sterilization, or pregnancy.

Guidelines For Instruction and Intervention

Acknowledge your child's sexual health needs

The first step towards acknowledging your child's sexual health needs is to remember that your child is sexual rather than asexual. Until you can begin to see your deafblind child as a person who is a sexual being, you can easily overlook his or her needs in this area. Remember that this is the aspect of physical development in which your child is most likely to resemble typical peers.

Advocate within the medical community to ensure the provision of appropriate services

As a parent or caregiver, you will need to become familiar with the types of medical exams that are appropriate for an individual your child's age. Search for a doctor who is willing to collaborate with you in planning for these examinations and who will give you and your child the extra time and attention that may be needed. Talking with other parents of children with special needs may help you to locate the kind of physician you want.

Just as you plan for vaccinations, regular dental exams, and other routine wellness activities, include planning for exams that address your child's sexual health. Your doctor or nurse can provide some timelines for when these exams are typically done. They should include pelvic and breast exams beginning in your daughter's late teens. As she ages (about age forty) mammograms are recommended. Your son should have regular testicular exams. As he ages (about age fifty) you may want to include prostate exams as well. Discuss with your doctors what is involved in these exams, the age that is recommended for beginning them for a person without disabilities, and how frequently they should be repeated. They should be included as part of regular physicals for the individual with deafblindness and significant developmental delays.

Understand how the etiology affects sexual development and sexual health

There are specific syndromes that may result in deafblindness, and many of these have aspects that affect sexual development and sexual health. Some syndromes may typically have early onset of puberty; others may result in delayed puberty or puberty that is absent without hormone therapy. Some syndromes have behavioral characteristics that result in excessive anxiety or pain. These behavioral traits may escalate with the onset of puberty, the pain of menses, and so forth. Get as much information as possible about the impact of your child's etiology on his or her sexual development and sexual health. Make sure your doctor and other caregivers are aware of these issues too. Good resources for finding this type of information are national support groups or foundations that focus on particular syndromes or conditions or NORD (National Organization for Rare Disorders).

Share a complete family medical history with your doctor

The child with deafblindness and developmental disabilities does not escape increased risks for medical conditions that may hereditary. For example, if there is a high incidence of ovarian cancer in your family's history, your physician should know that information. It may not mean that your deafblind daughter will have ovarian cancer at some time, but just like your other daughters, she may need to be watched more closely for the condition. Also, a thorough family medical history may be helpful in determining safer birth control medications and may have impact on other types of medical treatment.

Know the laws that relate to managing your child's sexual health

Children in this group may never be able to manage their own health or make independent decisions about birth control, reproduction, pregnancy, medical intervention, and so forth. However, parents should not assume that they always call the shots for their child. There are certain health-related issues that can be addressed by a parent only until the child turns eighteen. At that point, some type of guardianship may give parents partial control over medical interventions. It is important to know your state's laws about medical decisions that are specific to sexual health. For example, there are abortion laws specific to every state. If your daughter were to become pregnant, you may or may not be able to make a decision for her about an abortion. Additionally, surgical sterilization may not be permitted just because you request it. Although many parents feel that this is the appropriate way to ensure the deafblind child's health, there are some important legal considerations of which parents should be aware related to this issue. The American Academy of Pediatrics' Committee on Bioethics advises that physicians be aware of state law dealing with the age of consent and the sterilization of minors with developmental disabilities. They write:

The age of consent, including that for surgical procedures, varies from state to state. Some minors may be old enough under applicable laws to be considered eligible to agree to sterilization if otherwise capable of doing so. In such cases, a careful clinical assessment of decision-making capacity must be performed by a professional skilled in and experienced with evaluating the capabilities of persons with disabilities, such as a psychiatrist, licensed psychologist, social worker, or pediatrician. Adolescents who have been declared by judges to be mentally competent for the purpose of accepting or refusing sterilization are entitled to make whatever decision they believe furthers their own interests. In some states, laws or court precedent forbid procedures aimed primarily at accomplishing sterilization solely on the authorization of parents or other legal guardians consulting with appropriate physicians and surgeons. When the involved parties believe surgical sterilization to be the best option, application to the courts may provide the only lawful means to accomplish that goal. Physicians and surgeons should be familiar with the law that applies to the jurisdictions where they practice.

Committee on Bioethics, American Academy of Pediatrics - Sterilization of Minors With Developmental Disabilities, Pediatrics, August, 1999, 104(2) p337-341.

The laws related to sexual health, consent, and personal liability can be overwhelming to both parents and caregivers. It is understandable that they may sometimes feel it is easier to avoid the issue altogether. After all, maybe nothing will happen. It is important to remember that failure to address a child or young adult's health needs may be considered neglect. Parents and other caregivers must understand their responsibilities and limitations under the various federal, state, and local laws.

Typically your doctor should be able to help you get this information. Other resources include lawyers who are experienced in guardianship issues; national, state and local Association for Persons with Mental Retardation (ARC), your state's child protection and advocacy agency, and your state's parent training and information center. For your protection, as well as for the protection of your deafblind child, learn what your state laws are related to managing your child's sexual health. If you are a professional working with an adult residential program, your program should have very clear policy relating to the management of clients' sexual health-care needs. This includes defining how decisions about medical treatment, birth control, consensual sex, and pregnancy will be handled, the rights of the parents/guardian, and the rights of the individual with deafblindness and additional developmental disabilities.

Tap into the expertise of seasoned professionals and parents with older children

Parents can feel very alone when trying to manage their child's sexual health. It is always helpful to talk to another parent who has already dealt with these issues. He or she may not have the answer that is right for you and your child but may be able to help you clarify your concerns and point you in the direction of resources. Parent support organizations such as National Family Association for Deaf-Blind (NFADB) or ARC, state-level support groups, and local groups are a good place to go to make these connections.

There are also educational and medical professionals who are knowledgeable about issues and resources. Bring your concerns to your child's educational or rehabilitation team. Talk to your family doctor, Planned Parenthood, or school nurse. The more you know, the easier the decisions will become and the better your choices will be. Silence and worry will not get you or your child with deafblindness very far. Educational and rehabilitation professionals should also make use of these resources. The more information they have, the better prepared they will be to help the family and the young adult with these issues.

Include IEP goals that help prepare for medical examinations

Like any other area of sexuality, managing sexual health issues is a skill that an individual with disabilities needs to live a happy and healthy adult life. It is appropriate to focus on skill development related to these needs as a part of the child's educational program. The goals of instruction should be very limited. Typically he or she will not be making decisions about birth control, medical procedures, and so forth. Instead the goal for instruction should be to reduce anxiety and to gain better cooperation during examination and treatment.

Develop concepts

There are specific concepts that the child with deafblindness and significant developmental delays will need even if he or she is not capable of participating in sexual health-care activities. For example, not understanding what is happening during a medical examination of any kind can be traumatic for the child. Learning concepts such as "penis," "vagina," "breast," "doctor," "nurse," "examination table," "calm," "wait," "touch," "lie down," "temperature," "blood pressure," and so forth are important. If the child understands these concepts it will be easier to explain what will happen during an examination.

Release staff to support the child during the examination

At the family's request, schools should consider allowing release time for staff to support families during these exams. This experience is one that can be used by educators and parents to work on many important life skills for their child or young adult and it will involve some planning. For some school programs, it may also require persuading higher-level school administrators to support the effort. But the benefits to the medical staff, the family, and most importantly to the child are worth it. Since participation in medical examinations and procedures is probably certain to be a regular part of deafblind individuals' lives, this level of instructional support leads to important adult outcomes.

Take a distraction to the exam

Bring along a favorite toy or object to distract the child when he or she becomes anxious during a doctor visit. For example, one young woman was very fond of plastic flowers. When she arrived at the doctor's office, her parent gave her a new bunch of flowers to hold in her hands. They talked to her to keep her attention engaged on the flowers rather than on the doctor's activities.

When the exam is finished, help the child deal with his or her feelings

These examinations have a big impact on some children and young adults. It is important to take time after the visit to talk about what happened. Collect items from the visit that can be used in a story bag or box to review what happened, then placed in a finished box on a calendar. This often helps the child know that the exam will not happen again today, and allows everyone to get back to a normal routine. For children who are able to use more sophisticated calendar systems, looking forward in time to discuss that there are no more examinations scheduled in the near future can be helpful as well. Set aside opportunities to review and share the experience, affirming what has happened, how well the child did, and that the exam is finished.

Use Routines

Developing a routine around a visit to the doctor can reduce anxiety for the child. This type of routine is good for any kind of visit, not just ones related to sexual health. Before you take the child in for a particular examination, find out what will happen during this visit, and incorporate the details into a step-by-step routine.

Practice the routine by going through some of the steps with the child. For example, practice changing into an examination gown, having his or her blood pressure checked, and getting on and off an examination table. The school nurse could assist with the practice of these activities. If you don't have a school nurse, talk to your family doctor about setting up some practice visits to the office. Ask the school to allow educational staff to plan an individual "field trip" to the doctor's office. The teacher can then support the child and you in becoming familiar with the examination room and the devices that may be experienced during the visit.

Use calendar systems

If the child uses any type of calendar system, represent the activity with some type of symbol. This can help the child anticipate when visits might occur and when they are finished. Also if he or she can anticipate a favorite activity after successfully completing the examination, getting through the event will be easier. For example, when you sense anxiety building during any part of the exam, you can reassure the child by reminding him or her, "Wait, calm, lie down. Finish, then ice cream." Bring along the symbol for ice cream and show it to him or her. Don't hesitate to use bribery. This is one time when his or her favorite reward should be a guarantee.

Develop instructional units for certain children

Some children benefit from a unit related to medical exams. For the student who can categorize and who already has the ability to represent information in an abstract manner (pictures, print, signing, etc.) the use of instructional units is important. Since male and female wellness checks (pelvic, breast, testicular, and prostate examinations) are such a different experience from other types of examinations, the deafblind individual can benefit greatly from some advance preparation. You could begin an examination unit even at a young age and limit the focus to temperature, blood pressure checks, and so forth. As the young adult nears the age for a breast, pelvic, testicular, digital rectal examination, these new aspects could be added to the routine.

Sample Unit on Preparing for a Well-Woman or Well-Man Check

Concepts To Learn:

  • Names of the body parts involved in the examination (breasts, vagina, testicles, rectum, etc.) and other concepts such as doctor, nurse, examination, table, lay down, gown, lamp, calm, wait, hurt, change, on, off, touch.
  • You change into a gown for this type of visit. You will put your clothes back on soon and leave. (For those individuals who associate the gown with being admitted to the hospital, assure them that there is no hospital stay involved in this procedure.)
  • Other men/women the student knows have these visits as well. (Mom, Dad, the school nurse, the teacher, Uncle Bob, Aunt Kay).

Activities For Instruction:

  • Using an anatomically correct figure, simulate going through the doctor's visit step-by-step and discuss. Have the child assist with each step of the activity, and allow plenty of time for him/her to examine the devices that will be used.

Include the Following Steps for Both Well-Woman and Well-Man Checks:

  1. Take off the figure's clothes.
  2. Change it into a gown.
  3. Put the figure's clothes nearby.
  4. Put the figure on the examination table.
  5. Complete the basic steps involved in any visit on the figure (taking temperature and blood pressure, listening to the heart).
  6. Tell the figure to "lay down" and discuss how the figure must stay still and be calm.

Steps to Add for Well-Woman Check:

  1. Let the student know that the doctor will pull down the gown to check each breast. Discuss in terms such as, "Wait, patience, calm, doctor okay touch breast." Demonstrate on the figure and then let the student practice this step with the figure.
  2. Put the figure's feet in stirrups. Discuss in terms such as, "Feet up. Wait, calm, doctor okay touch." Let the student examine how the feet are placed.
  3. If the doctor is going to use a lamp, have one there to use. Let the student explore the lamp, turn it on, and discuss in terms such as "Doctor, light look, okay."
  4. Using the figure, show the student that the doctor will be examining the pelvic area and discuss with her in terms such as "Wait, doctor touch okay, look vagina, hurt little, calm, patience." (Depending on the student, you may use a swab to insert in the vagina of the figure and discuss in terms such as "Calm, patience, doctor touch in vagina, hurt little, okay." If there is a speculum available for the young woman to examine, allow her to do so and explain how it will be used. Use the correct vocabulary according to child's communication level: vagina, vulva, etc. You may let the student be the "doctor" if she can make that association.
  5. Tell the figure and have the child tell the figure, "Finish."
  6. Get the figure up, change its clothes, and say good-bye to the doctor.
  7. Talk about where the figure will go to have a special reward for being good at the doctor. Be sure to use the reward that will mean the most to the young woman.

Include the Following Steps for a Well-Man Check:

  1. Lay the figure on the table and elevate the right leg. Discuss in terms such as "Leg up, wait."
  2. Feel the scrotum area for the right testicle. Discuss in terms such as "Wait, patience, calm, doctor touch testicle, okay."
  3. Roll the testicle between the thumb and fingers to examine. Discuss in terms of concepts like "Wait, calm, patience, doctor hurt little." You may let the student be the "doctor" if he can make that association.
  4. Lower the figure's leg and repeat with left leg.
  5. Tell the figure and have the child tell the figure, "Finish."
  6. Get the figure up, change clothes, and say good-bye to the doctor.
  7. Talk about where the figure will go to have a special reward for being good at the doctor. Be sure to use the reward that will mean the most to the young man.

Other Instructional Activities for Both Male and Female Deafblind students

  • Borrow a gown from the doctor. Take the child to the school nurse's office. Have him or her change into the gown, and place the street clothes on a chair. If possible have him or her get on the examination table or a couch. Ask the nurse to go through some of the routine checks like taking the temperature and blood pressure, listening to the heart, and so forth. Have the student change back into his or her clothes. Go for a special reward.
  • If the student has enough vision and picture recognition skills, draw sequence pictures that show the basic steps of an examination and discuss each one. Have the child try to find the correct picture representing each step, and then talk about it. Arrange the cards in the correct order as you discuss what happens next.
  • Make a field trip to a doctor's office so the student can see the office and talk through what is going to happen. Take the sequence pictures or object symbols with you and locate the real items (gown, table, stirrups, swab, speculum, etc.) and discuss what will happen. If possible, meet the doctor and nurse. Go for a special reward.
  • Schedule the visit in the student's calendar so he or she can be prepared for the visit. Note that it is a special day, but just part of it will be different from normal. Reassure the child that things will return to normal after the doctor visit is finished.
  • After the student is familiar with the process and has the vocabulary, have a familiar same-sex adult talk with the student about having an examination. Make sure this person is prepared to discuss it and can focus on concepts and vocabulary the student is familiar with through your lessons. This adult can assure the student that he or she has had the exam and it was okay. List other people he or she knows who have had the examination as well. It is also a good idea to let the student know the examination is "private" so it will not become a constant topic with the general public.

Conclusion

Regular attention to a child or young adult's sexual health-care needs is critical. Parents and educators should make it a focus of instruction and intervention for the child with deafblindness and significant developmental delays. Parents, rehabilitation staff, and other caregivers must be aware of the laws related to managing sexual health issues, providing birth control, pursuing surgical sterilization, and addressing pregnancy. They should discuss concerns with the young adult's doctor and plan for his or her needs now and in the future. In making choices about their child's sexuality, parents can benefit from discussing their concerns with other parents and with caring professionals from the medical, legal, and educational communities. They should advocate for quality health education programs as well as the child's right to have good sexual health care.