Puberty and periods in girls with developmental delay

This month, My Family, Our Needs is focusing on puberty in young girls and boys with additional needs. If you haven’t read Samantha Renke’s personal story of puberty yet, you can catch up here.

Here we have some practical advice and ideas to introduce at home for young girls approaching puberty from Kate E. Reynolds.

An author, public speaker, PhD researcher and consultant working in relationships and sex education and the impact of autism on girls and women, Kate has had eleven books published. More importantly, Kate is mum to a teenage son on the autistic spectrum who has learning disabilities. This has given her invaluable insight when it comes to supporting parents and carers.

Next week, Kate will focus on puberty in boys with additional needs. Make sure you stay tuned for that.

Although some children with additional needs 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 sexual education, usually until they experience issues or problems. These could be things like 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 just starting to cover the basics.

Public and private places, behaviours and conversations

It’s a good idea to change nappies or help 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 and talk about the difference between a private or public place. Limit nudity to private areas and encourage covering up between rooms, such as the bathroom and bedroom. It may also be a good idea to 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 appropriate 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 all disabled people are ‘huggy’ (notably those with Down’s syndrome) and this is part of their disability. Ensure all family and friends agree to support your house rules when it comes to having different greetings for different people (hugs for close family or high fives for friends).

Puberty

Girls start the process of puberty from 8 to 13 years with physical changes. These usually happen over four years in phases.

First phase:

Breast ‘buds’ will grow which may be tender. If your daughter has difficulty communicating how she feels, you may notice her mood altering if she has discomfort in her breasts or be unwilling to let you help her wash her chest. Anticipate this by giving simple pain relief.
Pubic hair starts to grow, as well as more hair on the legs and arms. For disabled girls with sensory issues, this growth may be uncomfortable to experience; especially if they haven’t been prepared for the changes happening to them.

Second phase:

Breasts continue to grow. Whatever additional need your daughter may have, she can still be involved in decisions about bras, being measured professionally to ensure comfort and making her aware that all women wear bras.
Armpit hair develops and pubic hair becomes coarser and sometimes curlier.
Periods usually start about two years after this but girls can be as young as 8 so you need to prepare young girls early.
Weight gain is to be expected as a young woman’s body shape changes. Her hips will become fuller and more fat is laid on the 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 she may notice other things going on with her skin, such as black/whiteheads and spots forming. She may also experience white vaginal discharge. It’s a good idea to establish a hygiene routine in early childhood which can be continued in puberty.

Explaining periods practically at home

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

1. Be hands-on

Show your daughter what sanitary pads and tampons look like.
Use red food colouring 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 so that your daughter knows when to expect them.
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. You could introduce aids to help her remember to do this, including alarms or timers or introduce a 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. Prepare

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 in public spaces.

5. Think outside the box

Use different methods and learning opportunities to reinforce messages about periods.
This could include 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 self-care

Teach your daughter how to manage the unpleasant symptoms of periods by getting plenty of sleep, drinking lots of fluids, using hot water bottles, warm baths or suitable pain relief.

7. Be positive

Periods are part of ‘normal’ maturing and growing into a young woman.

8. Pregnancy

Do mention pregnancy – some parents are tempted to ignore the fact that periods herald a time when a woman could get pregnant. This could be because they feel the young person may fixate on pregnancy or be afraid of having a baby.
Keeping a young woman in ignorance doesn’t prevent pregnancy, whereas equipping them with information gives them knowledge, understanding and power of their own bodies.

9. Frequency

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

10. Choose the right products

Tampons are a possibility for young women with developmental delay. Their use will depend 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

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

12. Boys

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!

Visit the website www.autismagonyaunt.com for more information and resources (both Kate’s books can be purchased there). You can also read more about Kate and her work on her Twitter page, Facebook page and her LinkedIn profile.