Sexuality and Down syndromeSexuality and Down syndrome
May Gannon, BSc Counselling and Psychotherapy, MA Dramatherapy
Sexuality
Informal learning about sexuality begins very early in life. Young children take in messages from everyday exposure to the attitudes and behaviours of people around them. Sexuality education is about more than biological workings of the body. Its goals encompass enhancing a person's self-esteem; facilitating interpersonal relationships; preparing for social experiences relating to friendships, dating and marriage; and increasing knowledge of the physical aspects of sex. The question is when and how this should be done. Each child is a unique individual with needs and abilities. Teaching must be adapted to suit each child. Very often parents and carers don't think about sexuality education until a problem arises with behaviour. Re-active interventions then deal with problem behaviour. It must be argued that long-term commitment to sexuality education is required in order to prepare young people, regardless of learning difficulties, for adult life.
Do children who have DS need to know about sexuality?
Typically developing children pick up information about their sexuality from books and magazines and from their peers. Children with Down syndrome are less likely to have access to written material or to ask questions. They do not automatically pick up subtle social cues regarding appropriate behaviour. They may misinterpret behaviour they view on television. They may have to unlearn age-inappropriate behaviour such as hugging and kissing strangers. For their growth, development and self-protection it is essential to provide them with appropriate sexuality education.
Who needs information?
It would seem that young men encounter greater obstacles than their female counterparts in their transition to the adult world. Physical changes in the female are more obvious than in the male body. Menstruation requires attention and appropriate education. In recent times research has reported that girls with Down syndrome begin menstruating as young as nine years of age. Parents have real fears of their daughters becoming pregnant so information for purposes of hygiene and self-protection is more likely to be given to them. Boys may get no information at all about what is happening to them. Physical changes may be as mystifying for boys as menstruation is for girls.
How do Children who have Down syndrome learn about their sexuality?
Recent research has established that children who have Down syndrome learn about their sexuality in the same way as typically developing children. However, their development of sexual awareness depends on several factors: the nature and extent of the young person's disability; his/her life experiences and opportunities for learning; and the attitudes of adults, family and the community (Drury, et al., 2000, p.11).
When do we start to teach about sexuality?
Touch and talk convey acceptance and love. Touching and caressing are the first lessons in love that a child receives from the family around him/her. Maksym (1990, p.19) argues that babies who are not touched enough learn to be uncomfortable with their bodies and do not trust others. We give messages to children all the time by the way we communicate with them: the tone of voice, body language, facial expression and even silences. Pre-requisites for the development of positive awareness of one's sexuality are self-love and acceptance by significant others. Acceptance is necessary for all persons to successfully grow and develop. Teenagers still need lots of positive re-enforcement in order to build up good self-esteem.
Modesty
When children know they are loved and welcomed the next concept they need to know is modesty. This is probably the first concept directly linked to sexuality. "Modesty is indeed the first blush of understanding that the body is owned by the self and that others don't have access to it. Modesty really is a claiming of the right to control who sees your body. This is the first step to understanding the right to control who touches your body" (Melbert Schwier & Hingsburger, 2000, p.62).
Because they take longer than their typically developing peers to wash and dress and toilet independently, parents are involved intimately with them for longer with the consequence that the concept of modesty may be delayed. This concept is necessary if they are to adapt to and understand the rules of society.
Maksym (1990, p.43) suggests that children with learning disabilities need to be consciously taught how to behave around others. They need to know how to greet others (e.g. shaking hands or hugging); public and private places and parts of the body; bullying, what to say and do; and when it is necessary to be assertive.
Public and Private
Around the age of five or six children seem to develop this concept of privacy quite naturally. They close the bathroom door and are particular about who sees them undressed. The child builds a personal boundary. Parents are usually involved for longer with a child who has a learning disability teaching them these intimate and private tasks of toileting and dressing. The result is the concept of personal boundary may be delayed. When a child makes a social-sexual mistake (e.g. coming out of the school toilet with pants down) the old myth of people with learning disability being a danger to society may govern reactions or perhaps over-reactions (Melberg-Schwier and Hingsburger 2000 p.62-92).
As well as public and private behaviour, there are also public and private places and parts of the body. Information needs to be clear and specific and taught over time. Using the words public and private appropriately, developing the concept that bedrooms and bathrooms are private places, knocking on bedroom doors, undressing only in a bedroom or bathroom are ways, which eventually convey the message that behaviour appropriate in one place is not necessarily appropriate in another.
Giving Choices
A child who is confident and assertive is less likely to bully or to be bullied. In order to say ‘no' to others, a child needs practise. Giving choices from an early age teaches a child to have some control over his/her life. "Would you like to wear your blue socks or yellow socks" allows a child to practice the skill of decision-making and problem solving. This practice will boost their self-esteem. However, not everything in life can be a choice. There are times when people have to do things they don't particularly like, such as getting up for work on a cold morning. Part of growing up means there are times when we must follow the rules or there are consequences.
Puberty and Adolescence
Puberty is a biological process, which happens as part of the natural life cycle. In people who have Down syndrome this process happens at around the same time as for their typically developing peers. Adolescence is a social process, more concerned with the social and emotional development of each individual. It is this aspect of development that can be influenced by the family, school and community by giving the young person age appropriate information about their developing bodies.
Many parents have difficulty talking about the area of sexuality with their children. When a child has a disability the area of sexual development may be even more difficult. Parents are torn between wanting to protect their son/daughter and encouraging their independence. Parents have a responsibility to protect their son/daughter and they must also be aware of the consequences of failing to provide them with adequate knowledge. While attitudes regarding people with disability have changed for the better in many instances, people still find it difficult to change their attitude towards sexuality.
Love and intimacy
As typically developing children grow parenting styles change. This also needs to happen when parenting a child with Down syndrome. People who have Down syndrome do grow up and become adults who have expectations for themselves and their future. People who have Down syndrome are unique individuals with gifts and talents. They are entitled to lives of love and intimacy. The reality that must guide our attempts to provide adequate learning opportunities for them should be that the "denial of children's rights to lives of love, friendship and intimacy leads directly to a situation in which adults with disabilities are starved for affection so they are easily victimised" (Melberg-Schwier and Hingsburger, 1999, p.133).
Managing Menstrual Symptoms
Menstruation is no different for girls with Down syndrome than for their typically developing peers. They have regular cycles with the same irregularities as their peers. Standard pain relief should be offered for mild abdominal cramping or lower back pain. Although there is no evidence that having Down syndrome means periods will be more difficult, girls with cognitive disabilities may have difficulty expressing pain and discomfort in traditional ways.
Research has shown that 76% of girls with Down syndrome have regular menstruation and that 88% ovulate regularly and can become pregnant (Scola & Pueshel, 1992, Jan 79 (1) 91-4).
Can Males with Down syndrome father children
Compared to males in the general population studies have confirmed that males with Down syndrome have reduced rates of fertility. However, there are three documented cases of males fathering a child. These cases illustrate that if a male who has Down syndrome is in a sexual relationship and parenthood is undesirable then contraceptive education is essential (Couwenhoven, 2007).
References.
Drury, J., Hutchinson, L. and Wright J. (2000) Holding on, Letting Go, Souvenir Press, London, England
Couwenhoven, T. (2007). Teaching children with Down Syndrome about Their Bodies, Boundaries, and Sexuality. USA: Woodbine House.
Melbert Schwier, K., & Hingsburger, D. (2000). Sexuality Your Sons and Daughters with Intellectual Disabilities. Maryland, USA: Paul Brookes Publishing.
Scola, P., & Pueshel, S. (1992, Jan 79 (1) 91-4). Menstrual Cycles and Basal Body Temp Curves in Women with Down syndrome. Obstet Gynecol Journal,.
Note: Material is available from the library of Down syndrome Ireland to assist parents in providing sexuality education. For further information you may contact me at 1890 629 629 or 087 9607939.