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Learning about sexuality is essential to development, particularly for people with disabilities.
There are a number of misconceptions about sexuality and people with Down syndrome that are important to consider.
Myth : People with Down syndrome are asexual.
Truth: All people have needs for touch and affection, regardless of disability.
Myth : People with Down syndrome are oversexed/ uncontrollable.
Truth: Many people with Down syndrome have never been given the opportunity to receive information or opportunity to learn socially appropriate behaviours.
Myth : People with Down syndrome are overly affectionate.
Truth: Some people with Down syndrome have been conditioned to believe that displays of affection are ok with anybody regardless of relationship. This can be due to stereotyping – eg. ‘Children with Down syndrome love to give hugs so it’s ok to hug him every time we meet’.
Most children learn about sexuality through everyday informal learning. This can be a combination of things like observing the people around them, watching tv and interacting with their peers. It is important to realise that this may become a barrier for children with Down syndrome for a number of reasons, primarily that the abstract thinking necessary to evaluate these observations may be a skill that is not as developed as other children.
Formal learning is becoming more common; however most programs tend to focus on topics such as pregnancy and contraception based on the assumption that the basic concepts have already been mastered.
Families, therefore, play a vital role in sexuality education for children with Down syndrome. There are three key concepts that provide the basis for a healthy sexuality: Private vs. Public; Rules about Touch; and Personal Safety. The latter concepts will be addressed in articles to follow.
Private vs. Public
Privacy can be a really tricky concept to master and requires ongoing reinforcement. Think about all of the people who may potentially come into contact with your child in a ‘helping’ sense, that is close physical contact that may not otherwise be appropriate – physiotherapists, speech therapists, occupational therapists, doctors, nurses, babysitters, support workers… and the list goes on.
Imagine a child who needs a lot of assistance to get dressed in the morning - but among all of the other things that need to be done it’s easier to help with dressing in the kitchen while the rest of the family eats breakfast. Toilet training is a focus so s/he is used to being watched closely when using the bathroom which has a strict open door policy even when guests are at the house. The same child then strips down to their underwear in the school playground during a hot lunch time and finds themselves in serious trouble with the teacher, principal and parents who are all concerned about this ‘problem behaviour’.
How confusing it must be for a child to be shown that it’s ok to be naked in front of people some of the time but not at others. It is for this reason that we must try to be as consistent as possible when teaching the concept of private vs. public.
Obviously there are times when this is necessary. We all know that it can sometimes take longer for kids with Down syndrome to master tasks such as toileting, bathing, dressing etc. However we need to keep in mind the message that we are sending by the way we approach these tasks.
It can be as simple as explaining what is happening each time you do it. For example, helping a child to bathe and dress can be done in the bathroom with the door shut. A simple explanation of ‘the door is closed because this is a private behaviour’ can work wonders by reinforcing the concept of privacy.
It can also be helpful to introduce questions such as ‘is it ok if I help you dress?’ to reinforce the important point that our bodies are private and you cannot look or touch without permission.
It is essential that children learn the correct names of body parts and the ‘rules’ about which ones are private. A simple way to explain this is that anything covered by your swimmers is private.
When teaching the concept of private body parts that we should be careful to avoid the suggestion that ‘private’ means ‘bad’. The focus should be on the fact that ‘private’ is ‘normal’ but it is only for us and the people we give permission to.
Another important point to remember, and one I cannot stress enough, is that this is a lifelong lesson. The concept of privacy is something that needs to be reinforced well into adulthood to ensure a clear understanding of what it really means.
A strategy that may be useful for older children and adults is the labeling of ‘private rooms’ and ‘private clothes’. A simple picture of a closed door, a big letter P or any other image that the individual associates with privacy will work fine. Work with them to identify the private rooms in the home and attach the private sign somewhere visible. Then do the same for the drawers that hold ‘private clothes’ (eg. underwear).
In this instance, if the person was to appear in the lounge room in their underwear for example – a simple ‘are you in a public or private room?’ enables them to look around for their privacy signs and answer accordingly. Following this, ‘are you wearing public or private clothes?’ enables the individual to think about whether they have made an appropriate choice.
This has two major strengths. Firstly, the individual is given the tools to work out the answer on their own. This can enhance their understanding of the concept of privacy and is a great way of reinforcing or ‘practicing’ those skills. Secondly, it reinforces that they have their own power. Rather than being told ‘you shouldn’t be wearing that in here go and put some clothes on!!’ they are being assisted to make their own choices.
Ultimately these are the goals of teaching people with Down syndrome the concept of public vs. private, in fact all of the concepts surrounding sexuality. It is about ensuring that they have the tools necessary to make informed choices and be empowered to know that their body is theirs alone.
Image: avialle - flickr
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