Disability and growing up
Puberty can be an awkward time for any family, but for disabled young people it can be especially confusing. Many of the challenges of growing up are universal – figuring out how to talk to a child about sex and relationships without too much embarrassment, for example – but young people with disabilities and their families also face some specific challenges.
Every disability is different, and what’s difficult for one young person and their family might well pose no problems at all for someone else. But there are some general things to keep in mind as your child grows up. This guide is a good start.
Things to consider
Disabled young people have the same needs for sex education, healthcare and opportunities to socialise and discover their sexuality as their non-disabled peers. But disability can affect a young person’s sexual development in many different ways. For instance, some disabled young people miss out on early experiences of sex and relationships (like kissing and flirting) due to a lack of privacy in their daily life. It’s important to be sensitive to the different ways your child’s disability might affect their sexual development, while remembering that they’ll still want and need many of the same things as their peers.
You might want to speak to your child’s teacher about their school’s sex education programme in advance – especially if you think your child would benefit from being prepared for some of the lessons beforehand. It’s a good idea to talk to your child about puberty and growing up as early as you’re comfortable with, so they’re prepared for any physical changes in advance and not overly worried by new information they might hear in school or from friends.
When you start talking to your child about the changes that will happen during puberty, use the words they are familiar with and gradually introduce the correct medical names for their body parts and functions. This is especially important if your child will have to be in hospital on their own – they might be embarrassed to explain a problem to a doctor or nurse if they don’t know the right words.
If your child has a disability that requires intimate personal care, you’ll need to think about how to respect their changing needs and privacy as they enter puberty. Everyone involved in your child’s care should consider the following:
- Knocking before entering private spaces like a bedroom or bathroom.
- Always asking permission before doing intimate things like helping your child get undressed.
- Involving your child in discussions about personal care plans, especially when changes need to be made.
- Considering whether intimate personal care is still necessary – is there equipment which could help your child manage alone? If intimate care is necessary, think about whether it should be provided in a different way.
- Reassessing how many people need to be involved in your child’s personal care and trying to keep it to a minimum.
- Communicating clearly with your child and explaining why procedures are necessary.
- Making sure new care workers are aware of your child’s boundaries and informed of the appropriate language to use. Make sure your child knows they can come to you if someone doesn't respect their boundaries or makes them feel uncomfortable.
- Giving your child more alone time.
Some young people with learning disabilities may have trouble understanding the difference between what’s acceptable in public and in private. You might want to remind them that some things that are perfectly natural to do alone, in a personal space such as a bedroom or bathroom, are inappropriate in public.
Talking about sex and relationships
This can be a tricky subject for any parent – and many of the issues are the same whether or not your child has a disability. It often helps to start early and talk about it little and often rather than in one big conversation. It’s helpful to be open, honest and prepared to listen – it will make your child feel more comfortable talking to you about sensitive subjects.
When you talk to your child about sex, take their disability into account and be realistic – it might take longer, for example, or mean experimenting a little. But you can also remind them of the fact that even if things aren’t always easy, sexual intimacy isn’t the only (or most important) thing about relationships – friendship, love and respect are just as key.
It’s important to remember that everyone’s relationships are different. Your child might have limited interest in dating or they might be ready for their first boyfriend or girlfriend long before you expected. They might have relationships with disabled or non-disabled people, or have a same-sex partner.
Whatever happens, the most important thing is to let them know you support and love them unconditionally.
For more support, you can call the Contact a Family freephone Helpline, an advice service for parents and family members caring for a disabled child. Contact a Family also has a dedicated SEN (Special Educational Needs) service to advise families, on any aspect of their child’s education. Freephone helpline 0808 808 3555 (9.30 – 5pm Mon-Fri)
Expert advice: Contact a Family
Image: Carissa Rogers CCBY
This article first appeared on ParentInfo.org.