Infants born to mothers with Down syndrome are at increased risk for premature delivery and low birth weight Bovicelli et al, Pregnancy outcomes obtained from a study of mothers with Down syndrome are displayed in Table 5. Whether a woman with Down syndrome constitutes a high risk pregnancy depends largely on cognitive level and medical status.
Obviously, the presence of maternal cardiac, thyroid, or hepatic disease, as well as seizure disorder, complicates a pregnancy. The high incidence of congenital heart disease in any offspring with Down syndrome contributes to pregnancy risk, including stillbirth and neonatal death Gordon, Offspring without Down syndrome have a greater than average number of congenital anomalies Bovicelli et al see Table 5. Only scant information is available on the parenting abilities of individuals with Down syndrome Van Dyke et al, The issue of parenting by a mentally disabled individual is a controversial one.
Some professionals maintain that children of mildly retarded couples are probably no worse off than children of individuals who are "classified as culturally deprived" Nigro, Other authors opine that mentally disabled parents may be more likely to neglect their children through acts of omission but that purposeful abuse may be infrequent, especially in the setting of adequate societal and family supports Tymchuk, In summary, sexuality is an intrinsic aspect of human development.
Individuals with Down syndrome need individualized instruction and education to develop appropriate sociosexual behaviors. While individuals with Down syndrome have unique and sometimes complex medical needs, they still require routine reproductive health services recommended for the general population including urological care for men, gynecological care for women, and preventive medical services.
Education and counseling to prevent unplanned pregnancy, abuse, and sexually transmitted disease should be part of the routine medical care and education for individuals with Down syndrome. All individuals with Down syndrome have the right to develop and express sexuality in an emotionally satisfying and socially appropriate manner.
It is the responsibility of care providers to facilitate communication, research, and support services to accomplish this goal. Cookies on DSE sites - We use cookies to provide essential functionality and to analyse how our sites are used.
Learn More Accept. Issues of sexuality in Down syndrome Don Van Dyke, Dianne McBrien, and Andrea Sherbondy As human beings, individuals with Down syndrome have the right to emotionally satisfying and culturally appropriate sexual expression.
Table 1. Developmental issues in sexuality. Table 2. Methods of contraception in Down syndrome. Males condoms surgical sterilization vasectomy abstinence Females female condoms spermicidal foam and gels diaphragm cervical cap vaginal sponge IUD oral contraceptives Norplant IM deprovera surgical sterilization tubal ligation or hysterectomy abstinence Ref: Laros, ; Elkins, ; Doty, Table 3. Contra-indications for use of oral contraceptives in Down syndrome.
Table 4. STD transmission risk per coital episode. It seemed equally simple that children do not have sex; only adults have sex. But, my son now looked forward to the day he turned eighteen as the day he became a man and the day he could have sex. Due to my son's ever-expanding interests, I renewed my search for a good book to help him understand the changes his body and his emotions were going through. From the cartoon illustrations in this book he could glean some information independently, especially after we had read and discussed the book together.
Finding sexuality education materials for people who cannot read, or read well, that are not designed for institutional use continues to be very difficult. I continued to search for material that was age-appropriate, required no reading, was attractive, and encouraged responsible sexual behavior. My son and I often watched people at the mall. As he progressed through puberty, he became an avid girl-watcher. We would discuss the characteristics in girls he found attractive while I shared with him my values around attractiveness, public behavior, dating, sexual expression, and life in general.
One day I pointed out a girl that was similar in age to him who also had Down syndrome. I was mortified at his response to my assertion that she might be girlfriend material. He completely rejected the notion saying, "No way Mom, she can't be my girlfriend. His response was unexpected and logical: "I need to date girls who drive.
Few people with Down syndrome can learn to drive competently due to common characteristics including slow reaction time. Of those people with Down syndrome who do drive, most seem to have learned in their twenties.
As he neared sixteen, I chose to tell my son it was his Down syndrome that prevented him from learning to drive rather than detail the specific reasons. Obviously, he understood that if he were going to be dating without his mom as a chauffeur, his date needed to be able to drive. Partly, because of his response to this girl, I reconsidered my thoughts on why I told him he could not learn to drive.
I began to tell him he was not ready to learn how to drive rather than he would never drive. Now, he nagged me and nagged me about when he would be ready and finally when he was eighteen and a half, I relented and began to give him lessons in a parking lot.
I decided I thought it was important that he know how to drive versus be a driver. He needed to be able to handle a car should he be in an emergency where ability to drive would be the only way out of a crisis situation. It also became increasingly obvious to me that to my son being able to say, "I know how to drive" represented far more to his ego than simply being able to move a car from point a to point b.
My son took to driving like a duck to water, although he has never been out of the parking lot marked for driver's education or allowed to exceed seven miles an hour. Unlike myself, who was clueless at his age about what to do behind the wheel of a car, he required no instruction at all.
He put the key in the ignition, changed gears, pulled out, signaled, turned, stopped, and parked on request. Today, he accepts for the moment that he will probably never drive on the street. Now I just need to figure out what to do with his desire to have a red Ferrari. One incident stands out in my mind as demonstrative of how our society denies people with Down syndrome their sexuality.
I watched a video with my son we rented called "Artemisia" Merlet, about the female Renaissance artist and the first woman to paint nudes. It had many scenes with female and male nudity that I thought were appropriate for my son and would allow him the opportunity to view the female body tastefully.
It had one scene that happened in a bordello that I was unprepared to discuss with him and during that scene we went to the kitchen to make popcorn. Later, he told a respite care worker about watching the movie and she reported me to Social Services. Two social workers came to the house and suggested that I was subjecting my son to too much sexual stimulation. I eventually convinced them that I was presenting him with considerably less stimulation than his peers without disabilities were experiencing and explained that unlike his peers, my son cannot independently purchase sexually oriented magazines, surf the internet for pornographic sites, or even discuss sexual feelings and ideas fluently as boys his age often do and yet he still needs age-appropriate sexuality information.
David Hingsburger, a Canadian sex counselor, has developed two excellent videos "Hand Made Love" and "Under Cover Dick" - designed primarily for men with cognitive disabilities. These videos were the second sex education materials I found to be really helpful to my son. Hingsburger recommends offering the viewer privacy in watching these videos in the accompanying manual, but my son and I watched the videos together the first time. I wanted him to understand that what he saw in them was nothing to be embarrassed about and to feel comfortable talking to me about what he saw.
I also felt it was important to watch his response to the videos in the event he found them distressing. My son wanted to know whether I also masturbated and was clearly surprised when I said I did. It was obvious he thought either that moms did not masturbate or women did not.
He then did something very similar to when he found out I had a vagina he began asking whether people he knew masturbated, name by name.
By these questions, it seems clear to me that he does not benefit by the same kinds of experiences as his peers. I am unaware if he has ever had the opportunity to talk openly with his friends about sexuality and its impact on his life prior to his sex education class in school at age seventeen. I continue to be surprised that my son and I keep having an open dialog about sexuality when most parents of teenagers have only brief discussions if at all, whether or not their children are disabled.
When I asked my son's pediatrician about his potential fertility, he insisted that the only way to know whether he was fertile was to test him. Conventional wisdom is that men with Down syndrome are infertile, but this belief might be as much from lack of opportunity to have sexual intercourse, due to same-sex segregation in institutions, as from infertility. He would have to ejaculate in order to test his fertility. Since I had no idea how to explain to him what he needed to do to be tested, I felt that he needed to know how to use a condom.
His pediatrician had already volunteered to help him learn how to put on a condom and so he checked out what he had learned by watching the video and gave him a supply of multicolored condoms to practice with at home. Soon after this visit with the pediatrician, I received a distraught phone call from a teacher. She was upset that I allowed my young adult child to carry a condom in his wallet.
She believed he was much too young to engage in sexual behavior. I agreed with this teacher and I told her that my son was committed to abstinence until his eighteenth birthday and I did not think he would break that commitment, but my fear was that he would be pressured to have sex and not be prepared to engage in it safely.
I taught him that he must always use a condom during sex no excuses, no exceptions. She was relieved, but still not convinced that keeping a condom in his wallet was prudent. The summer before his eighteenth birthday my son went to summer camp. When he returned home from his adventure, he flooded me with memories. A few days later he sheepishly came to me and told me he had something to tell me. He told me apologetically that he had not told me the truth about camp. I asked him what had he lied about.
He replied, "I got kissed by a girl while we were swimming and it felt good. He told me it was bad because he was not eighteen and I reassured him that it was OK. I tried to explain that kissing was not sex and that he was free to kiss whomever he pleased within reason and mutual consent. That evening after he went to bed I called everyone I knew that I thought would appreciate that my son had his first kiss. I looked forward to my child's birthday with a combination of dread and excitement.
He was becoming more interested in his peers as sexual partners. He was keen to share this interest with them, but also was clear that he could not have sex until he was eighteen. With his immature understanding, he continued to believe that kissing was sex.
He would tell his friends he wanted to kiss them, but they would have to wait until his birthday. Try as I might, I could not stop his fixation on this day as the magical time when all things would change.
I considered several solutions to the potential disaster of his birthday. I planned to have his birthday party two months early to coincide with my university graduation. I hoped that this would prevent the birthday party itself being the site of the transforming moment when he changed into a man. My budding adult remained resolute that he would not be a man until the actual date of his birthday.
Thankfully, by chance, we had the opportunity to spend his birthday week at Disneyland. This eliminated any interest in sex. The focus of his life was seeing Mickey Mouse. He was still excited to see young girls dress in their skimpy summer attire, but sex was far from his mind. This behavior illustrates one of the greatest difficulties that I have had in understanding my son's sense of himself as a person. One moment he interacts with his world as a typical eighteen-year-old, and the next moment his behavior is more typical of a three, eight, or twelve-year old.
How can I prepare my son to be an adult who consents to sexual activity when he is only partly able to comprehend its full potential?
Politics Covid U. News World Opinion Business. Share this —. Follow NBC News. By Catherine Chapman. But he loves everybody. His support worker Jade took him to one side to discuss the events at the disco. I asked her to be my girlfriend. I feel lonely. I thought you wanted a boyfriend.
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