Kate E. Reynolds

  • The P words: Puberty and periods in girls with developmental delay

    Although some of our children have delays in physical and social development, it’s rare that they have delayed puberty. Despite this, research shows that parents delay giving their children information about sexuality education, usually until they experience issues, such as masturbation in inappropriate places or discovering their child is sending ‘nudes’. Ironically these behaviours often relate to lack of education.

    When to start talking about puberty

    The short answer is: the sooner, the better! This doesn’t mean bombarding a five year old with the detail of tampons but starting to cover the basics of:

    Public and private places, behaviours and conversations

    It’s a good idea to change nappies or helping toddlers to use a potty in the lavatory and naming it as a ‘private’ place, rather than doing either of these things in the public areas of the home such as the lounge. Use ‘knock and wait’ signs on private doors, talk about being in a private or public place. Limit nudity to private areas and encourage covering up between rooms, such as the bathroom and bedroom, and limit the age that children are sharing baths. By around 7 years of age most typically developing children will be asking for some privacy.

    Personal space and Ok/not ok touch

    Our children need to be aware when others touch them inappropriately as well as ensuring their own behaviours are socially acceptable. This is sometimes undermined by the myth that disabled people are all ‘huggy’ (notably those with Down syndrome) and this is part of their disability. Ensure all family and friends agree to support your house rules e.g. having different greetings for different people (hugs for close family, high fives for friends).

    Puberty

    Girls start the process of puberty from 8 to 13 years with physical changes, which happen over around four years in phases

    First phase:

    • Breast ‘buds’ which may be tender. If your daughter has fewer communication skills you may notice her mood altering if she has discomfort in her breasts or being unwilling to let you help her wash her chest if she has this level of additional needs. Anticipate this by giving simple pain relief.

    • Pubic hair starts to grow, and more hair on legs and arms. For our daughters with sensory issues this growth may be experienced as uncomfortable, especially if they haven’t been prepared for changes.

    Second phase:

    • Breasts continue to grow. Whatever the additional needs, young women can be involved in decisions about bras, being measured professionally to ensure comfort and making them aware that all women wear bras.

    • Armpit hair develops and pubic hair becomes coarser and sometimes curlier.

    • Periods usually start after about 2 years but girls can be as young as 8 years old so you need to prepare them early

    • Weight gain is expected as young women’s body shape changes, hips become fuller and more fat is laid on arms and thighs. Try to convey this as growing into a woman, like other girls – often girls with additional needs want to be like other girls

    • Girls sweat more, acne may occur and other skin conditions such as black/whiteheads and spots and have white vaginal discharge. It’s a good idea to establish a hygiene routine in early childhood which can be continued in puberty.

    Explaining periods using principles of education at home:

    Here’s an example of how to use key teaching principles to teach about periods and how to manage them.

    1. Be hands-on: using red food colour or coffee to replace blood at different stages of a period, then drop some in the middle of a sanitary pad. Mimic a pad on day one, day two as heaviest then coffee for the end of a period. You can do the same for tampons, showing that they only expand a certain amount

    2. Be visual: draw lines on underpants showing where the pad sits, mark periods on a calendar, show photos of different types of pads and tampons, use pictures to show the inside of a woman and how a tampon fits into the vagina. Reassure your daughter that tampons cannot be sucked up into her body, but she must remember to remove a tampon regularly possibly using an alarm or rule around how often in her daily timetable to change her pad/tampon

    3. Demonstrate: if you feel able to do so, take your daughter into the lavatory with you and show her a used pad and how to replace it.

    4. Before her periods start, have your daughter wear a sanitary pad with fluid on it so she adjusts to how it feels. Practise using the specialist bins, notably in public lavatories

    5. Use different methods and opportunities to reinforce messages about periods, such as using books and online footage about periods, as well as talking about periods in private with your child (remember this is a private subject, in a private place to reinforce the ‘private’ message).

    6. Teach how to manage unpleasant symptoms, by getting plenty of sleep, drinking plenty of fluids, using hot water bottles, warm baths or painkillers to manage pain.

    7. Be positive: periods are part of ‘normal’ maturing, growing into a young woman.

    8. Do mention pregnancy – some parents are tempted to ignore the fact that periods herald a time when a person could get pregnant, often because they feel the person may fixate on pregnancy or want a baby. Keeping a person in ignorance doesn’t prevent pregnancy, whereas equipping a young woman with information helps to prevent unwanted pregnancy

    9. Remember to say that periods come every month – they’re not a one-off event!

    10. Tampons are a possibility for young women with developmental delay. Partly their use depends on manual dexterity, ability to relax to insert a tampon, ability to co-ordinate and cognitive abilities. For some young women, tampons offer a way of managing sensory issues associated with periods and passing blood or continuing a routine of sports or activities.

    11. Involve your child in choosing sanitary pads (not towels – this term may be confusing) and tampons.

    12. Remember that boys and young men also should know about periods and why women have them.

    And finally, don’t fear or ignore puberty – celebrate it!

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