Some disabled children will require assistance with intimate care from childhood through to adulthood.  This can become problematic as they enter puberty – causing potential distress and embarrassment.

As a parent this can be upsetting for you too and it is normal to feel a range of emotions from frustration to sadness and even anger. It is not easy knowing that your child will never be as independent as you, and they, would wish for themselves.

The guiding principle to help them through what can be a difficult time is to allow your child as much autonomy and choice over their care, as possible.

They should make the decisions about who carries out their care and how it should be done, within reason.

If your child is non-speaking, they may express their preferences through communication aides or through their behaviour.  Respect their wishes, or find a compromise, if necessary.

 It may be that as their parent you have always provided your child’s intimate care yourself – but as they mature, your child may prefer others to carry out these tasks. Alternatively, you may be the only person they trust and feel comfortable with to provide intimate care.

 Be patient as they learn how to do the tasks that come with puberty– read books together that explain what happens when they get their period or have a wet dream. Or watch DVDs. I If you are using visual schedules, introduce new symbols as needed. For example, if your child will need to change their tampon or pad at school, having an image of a sanitary pad, reminding them to change it at regular intervals. Social stories can also be useful to explain and reinforce new routines.

 When sorting out these issues, it’s a good idea to develop an intimate care plan, if you don’t already have one, or to update your existing one. It should detail your child’s preferences - who they are comfortable with providing intimate care, what kind of interaction is or isn’t okay, what may trigger a negative reaction. Document what your child can do themselves, and what they are learning to do. Clarify the best means of communication – for some children this may include visual diaries, social stories or sign language.

 The more your child has a sense of control over their body and their own privacy, the more comfortable and empowered they are likely to feel.

 If they require intimate care at school, make sure their carer at school is familiar with the intimate care plan and honours your child’s preferences and requirements.

 Having multiple intimate care providers in different environments is one known risk factor leading to physical or sexual abuse for disabled people.

Beyond the obvious steps of thoroughly vetting all intimate care providers and limiting their number and places where it occurs, there are other things you can do.

• Good sex and relationships education is important as it clarifies the difference between sexual touch and that required by intimate care.
• Make sure your child knows what constitutes abuse, and of their right to complain. Also make sure they know how to say ‘no’, or to communicate their non-consent.
• It can be difficult for disabled children to be listened to and believed.  Always listen to their concerns and pay attention to any signs of distress – changes in their behaviour, moodiness, or acting out sexually. There can be other reasons for all these things but investigate anyway.
•  Make sure carers are thoroughly familiar with your child’s intimate care plan to ensure consistent, appropriate care.
• Check in with your child regularly to see if they are comfortable with their intimate care and that it is being carried out in a respectful and safe way. You may need to update your child’s intimate care plan as they grow and develop.

Things for parents to remember:

• Be honest with yourself if you no longer feel comfortable providing your child with intimate care. This can be particularly difficult when your child has an adult’s body, but without being mature in other ways. Recognise they are no longer a child and both you and they may benefit from an honest conversation about getting someone else to provide personal care.
• Recognise that your teenage child may be frustrated at requiring your intimate care, at a time when they are programmed to distance themselves from you.
• Make sure your child has private time and respect their efforts to manage more of their own personal care.
• It is quite common and normal for young men to get erections during intimate care. Don’t panic – at this age almost anything can trigger an erection. But see if there is anything you can do to change your routine that will make an erection less likely – can they do some aspect of the task themselves? Importantly, try to manage any awkward feelings you may have, so that your child doesn’t feel shamed or embarrassed. Let them know it’s not a big deal.
• It can feel hard to let go, but by allowing your child to have greater physical and emotional distance from you may be the thing that allows you both to feel okay.

Helplines:

Anxiety New Zealand: 0800 269 4389 (0800 ANXIETY)

1737: Free call or text 1737 to talk to a trained counsellor

Depression.org.nz: 0800 111 757 or text 4202

Kidsline (for people up to 18 years): 0800 543 754

Whats Up (for 5 to 18-year-olds): 0800 942 8787

thelowdown.co.nz , Web chat, email chat or free text 5626

Youthline: 0800 376 633, free text 234, email talk@youthline.co.nz

Lifeline: 0800 543 354

Samaritans: 0800 726 666

Suicide Crisis helpline: 0508 828 865 (0508 TAUTOKO)