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Parents with disabled children: managing your time

If you have any children with disabilities, you are likely to face some unique challenges in your relationship with your partner.

One of those challenges will be managing your time together as a couple and as a family.

We've lost our quality time as a couple
New babies are very demanding of parents in the beginning, and babies with a disability can be even more so. Depending on the disability, parents may be required to spend extra time and energy trying to help them and nurture them. All this time spent helping your baby obviously couldn’t be put to better use and, in many cases, there’s nothing that can be done about it. But you may find yourselves being so busy that you’re not getting much quality time together, which can in turn have a negative impact on the relationship quality.Estimates suggest that more than half a million children in England alone have a disability [1], so lots of parents across the country are also facing this extra strain.  Why might we have less quality time? This is largely a practical matter - if you’re really busy looking after your baby and supporting them through a disability, then that’s just the way it is. But sometimes there are other reasons that quality time together gets lost. Consider if any of these apply to you: A large part of quality time is talking through the things that matter. But during more difficult times, such as being told that you’re going to have a child that has a disability, some people use keeping busy as a coping mechanism, and the conversation might feel just too difficult to have. For some, this news can be really hard to process, and you or your partner may be experiencing a certain degree of denial. Rather than face the problem and discuss your fears and expectations for the child and family life, you might instead be busying yourself away with other tasks. You and your partner may have had certain expectations in mind when it came to starting and raising a family of your own. When you discovered your child will be born with a disability, this perhaps changed some of those expectations. This internal struggle of expectation versus reality might affect you emotionally, which could in turn affect how you interact with your partner. Children quite rightly become the priorities of their parents. And when a child has a disability or vulnerability, they often warrant even more focus and attention. While this is the heart of any good parent, it can sometimes cause their relationship to descend down the list of priorities. In other words, the quality of the couple’s relationship becomes less important. How can I help myself and my partner? You and your partner might find it difficult to discuss how your baby’s disability or health complication might negatively affect your family dynamic and how you will work together to support them. By burying the issue, tiptoeing around it, or even pretending it isn’t there, you’re at risk of leaving yourselves unprepared. It takes courage to talk about the issues that frighten us, so maybe try writing down what you’re feeling first and reading it to your partner.  As things progress, try to have regular discussions and start making preparations together.The existing research on couples raising a child with additional needs says that: “Couples caring for a disabled child are at greater risk of marital problems and divorce.” While this relates to married couples, it’s likely of course that the findings also relate to those in long-term relationships. It simply serves  to show that any extra challenges to your lives as parents will challenge your relationship too, and therefore it’s important to value your couple time, even if, day-to-day, it doesn’t take priority over your child’s needs.If you and your partner are talking about the difficulties you will face, you are more likely to have realistic expectations and be able to deal with difficult situations when they come up [2]. For this reason it’s really important for parents to work on talking openly and positively about their fears and expectations [3]. References  [1] Glenn, F. (2007). Growing together, or drifting apart. London: One Plus One. [2] Pancer, S. M., Pratt, M., Hunsberger, B. & Gallant, M. Thinking ahead: Complexity of expectations and the transition to parenthood. J. Pers.68, 253–279 (2000). [3] Stamp, G. H. The appropriation of the parental role through communication during the transition to parenthood. Commun. Monogr.61, 89–112 (1994). [4] Shapiro, A. F., & Gottman, J. M. (2005). Effects on marriage of a psycho-communicative-educational intervention with couples undergoing the transition to parenthood, evaluation at 1-year post intervention. The Journal of Family Communication, 5(1), 1-24.
Article | disability, parenting together, communication
4 min read
What is the formula for a healthy relationship?
Is your relationship a positive one, or a negative one? For most of us, the answer is… it depends on the day. Like anything in life (family, career, home), relationships work best when the positive feelings and actions outweigh the negative ones. On a good day, when your partner is treating you well, listening to you, loving you and making your life easier, the scales tip to the side of ‘positive’. On a bad day, when your partner criticises you repeatedly, doesn’t support you and takes you for granted, the scales tip the other way.According to research, the key to a healthy relationship lies in the balance of this scale – the positives vs. negatives that both parties bring. Now you might assume that a relationship with NO negatives should be the goal. Surely any relationship would work better with NO disagreements? Well, no. Fortunately for most couples, the negatives are important for a relationship too. Negatives can include personality clashes, impoliteness, selfishness, criticisms and so on. So negative interactions can actually benefit the relationship… but why? “[The role of negativity] in a healthy marriage may be to spur a cycle of closeness and distance that can renew love and affection. ‘Off’ times allow couples to become reacquainted periodically and heighten their love.”[1] In other words, negative interaction allows for the courtship to be renewed in some small way. As with a dance, sometimes you draw in close, and sometimes you create distance. But how MUCH of this negative do we need in our relationship? What IS the recommended balance? In relationship studies, we seldom see any kind of formula, but in this case relationship researcher John Gottman [2] has provided us with one. 5 Positive : 1 Negative This means that for every one negative interaction, in order to set the balance and keep your relationship nourished you need to experience five positive interactions. These “positive” ones don’t have to be impressive or romantic gestures. They could just be bringing your partner a cup of tea, or taking the kids off them for a bit to give them some free time. Or even just being polite, paying compliments, laughing, touching, smiling and showing support. When you’re facing difficult and challenging times as parents trying to run a family, you’re probably not in a position to make big sweeping gestures like cooking your partner a three-course meal, whisking them off for a weekend away or even taking them out for the evening. So it’s just as well that the positives in the 5:1 ratio don’t need to be extravagant or overtly romantic. “Stable and happy couples share more positive feelings and actions than negative ones. Unhappy couples tend to have more negative feelings and actions than positive ones.”[3] It’s worth noting that while a negative to every five positives is encouraged, the word ‘negative’ is quite broad and certain types of negative (or too many negatives on a consistent basis) can be particularly destructive to the relationship. These more damaging negatives include great stubbornness, contempt, defensiveness, withdrawal from interaction and acts of aggression or physical violence. These really exist outside of the ratio – it’s important to remember that some actions and behaviours are never beneficial to a relationship.Lastly, there may be some couples out there who experience a ratio with lower negatives of say, 10:1 or even 20:1 where negative interactions are rare. Some even claim they don’t experience negatives at all. In a social gathering where other couples are discussing what they all argue about, this couple will often turn to each other with raised eyebrows and a hokey grin before saying: “To be honest… we just don’t really argue, do we honey?” And the other one shakes their head and goes “Nope.”, both of them apparently quite confused about what everyone else could possibly be doing wrong in their relationships. But you needn’t worry about achieving this level of harmony with your spouse. According to research, while a ratio of even 100:1 could be effective in the short-term, in order to sustain a relationship (or marriage) with real staying power, 5:1 is the ticket. References   [1] “Why marriages succeed or fail” – John Gottman p.65 [2] https://www.extension.purdue.edu/extmedia/cfs/cfs-744-w.pdf [3] “Why marriages succeed or fail” – John Gottman p.56
Article | communication, big changes
4 min read
Respite: better for the rest
If you can take a break from caring for your disabled child it can strengthen your couple relationship. Here we take a look at some of the research and explain how to go about getting some ‘you-time’.  Short breaks have been the key to our survival. They have allowed us to re-charge our batteries and have time for our other children and each other. This is necessary for any relationship but crucial for those with a disabled child in their family when having to cope with so many other pressures. When we asked parents what, if anything, had Imost helped their relationship since having their disabled child, the single most important factor was seen as time away from their disabled child - time to be with the partner and/or other child or children. [1]  Taking a break from caring for your child is not an admission of failure or a way of saying you don't care. A break is an opportunity to recharge batteries, spend time with others or pursue a particular interest. Short breaks (sometimes called ‘respite care’) may also allow your child to have a change of scene, try different experiences, have fun and make friends.Short breaks can include: Care at home - includes sitting or care attendant schemes, which provide someone to sit with or 'mind' your child. Day care away from home - includes nurseries, playgroups, out of school and weekend clubs and, during school holidays, access to playschemes. Overnight short breaks - includes an overnight sitting or nursing service if your child needs it. Residential breaks - includes residential homes, special units in hospitals and hospices. Family link schemes - where your child stays with another family on a regular basis or occasionally. What are the long term benefits for you, your relationship and your family life? A study from Oklahoma University found that psychological distress and anxiety of parents showed a notable decrease - even six months after having a break, parents’general well-being improved. [2] “When our child is looked after we spend quality time together”  Other research, with parents of children who have autistic spectrum disorder, found a direct link between the number of short break hours taken and relationship quality. In other words, for every hour of a break taken, the better the relationship. [3]  The researchers gave a very simple explanation for this: “Respite care helps reduce stress, which in turn affects marital quality.” It might just be that straight forward. How do I get a short break?  You should be able to find out information about short breaks and how to access them on your local authority website. Some short break schemes may be described as 'universal', which means they are available to all children and you don't need an assessment to access them. To see what short breaks may be available, you can also try contacting your local Family Information Service or use SENDirect to search for short breaks in your area. Families in Scotland can search for services at Shared Care Scotland, the national third sector organisation providing information on short breaks.   What if I’m refused a short break? It is quite common to hear statements like, ‘Our local authority no longer provides short breaks’ or, ‘We don’t do carers assessments in this local authority.’ If you find yourself in this situation, see Contact's guide to Challenging cuts to short breaks services (England), which has template letters you can use to write to your local authority: https://contact.org.uk/media/962264/challenging-cuts-to-short-break-services-final-3.pdf We are also encouraging families to write to their local council, to tell them why short breaks matter and to ask them to increase funding - see: https://contact.org.uk/news-and-blogs/short-breaks-matter-challenging-cuts-to-short-breaks-services/http://e-activist.com/ea-action/action?ea.client.id=1918&ea.campaign.id=48496&ea.tracking.id=FB  “Taking time to be with yourself, your partner and your ‘normal’ child can re-establish relationships that are buried under doctors’ appointments, being told what they can’t do, and hopes and disappointments of life” “Find time for yourselves. Grab any help you can get!”  We’d love to hear about your experiences with respite and short breaks, and how you’ve managed them in the past. Have you found that your relationship has improved through using it? Has it helped you to lower your stress levels? Or did you find it hard to let someone else take care of your child? Do let us know and get in touch with us via Contact's Facebook page.  References [1] Contact a Family, No Time for Us – relationships between parents who have a disabled child December 2003 [2] The Influence of Respite Care on Psychological Distress in Parents of Children With Developmental Disabilities: A Longitudinal Study Larry L. Mullins, Karen Aniol, Misty L. Boyd, Melanie C. Page, and John M. Chaney, Oklahoma State University. [3] Harper, Amber; Dyches, Tina Taylor; Harper, James; Roper, Susanne Olsen; and South, Mikle, "Respite Care, Marital Quality, and Stress in Parents of Children with Autism Spectrum Disorders" (2013). All Faculty Publications. Paper 1497. http://scholarsarchive.byu.edu/facpub/1497
Article | parenting together, disability
4 min read
Benefits of family recreational activity
We all know it’s important to get out, have fun and enjoy ourselves, but research suggests it’s actually good for our relationships and our families. Here we take a look at the evidence, and signpost to some helpful resources.For parents of disabled children, heading out for the day or enjoying a recreational activity outside the house usually requires a lot of organisation and planning ahead. It’s not always possible to just jump in the car and go, especially if your child needs supportive equipment or relies heavily on a rigorous routine.Having to plan everything to the letter can take the fun out of days out, and breaking routines can make things more difficult, but recent research suggests that doing an activity out of the house together as a family might well be worth the effort. “While the study has positive implications for the family as a whole, these outcomes were emphasized as particularly important for the children with a developmental disability.” A 2004 study from Mactavish & Schleien [1] found this to be especially true if families can: get a change of environment/scenery experience some spontaneity, and get a chance to socialise.    “Recreational activity” is just a catch-all term for a range of social, play, entertainment, and sporting activities. In the study, parents said the most popular activities by far were the physical ones, which included swimming; roughhousing games like catch or basketball; walking; and bike rides.Here are a few experiences from parents trying out more recreational activities as a family:  I give my child my undivided attention when we do activities together – where else is he going to get that? A chance to learn things, and a chance to feel more connected – for him and the rest of the family. Also, I do things in the hope that what we’ve done together will carry over to other things he does later on in life. Sam, as a 4-year-old, has a life almost as scheduled as mine – and I’m a lawyer! Needless to say, he’s exhausted by everything else that he’s programmed into . . . so although we think that activities that help him work on basic skills are beneficial . . . just as important to us, and probably more important to him, is that he gets to escape back to the life of a 4-year-old. Planning, planning, planning! That’s what it takes to get any family recreation activity going in our family – probably in any family with a kid with a disability. On the upside this is one way of making sure that everybody has a good time. On the downside, nothing is ever very spontaneous . . . so family recreation tends to get boring. Getting out of the house and doing things out in the community helps to make things feel a little less routine, less predictable. When those parents were asked about the main benefits of recreational activity together, here’s what came up as the most popular: “It makes us closer as a family” “It gives us something fun to do as a family” “It improves parents’ communication with the children” “It improves quality of family life” “Our children learn family values” Parents also said that family recreation time helped improve the quality of the couple relationship. Monotony can be a bit of a drain on couples just like it can with families - a simple change of scenery and a break from the norm can really create some space to enjoy one another’s company in a family context. It also builds on something known as ‘feelings of togetherness’ which make you resilient and help you cope with stressful situations. Together you form the foundation of the family setup, so getting some focused and intentional time together (away from the house, phones and computers) to just be together as a family will help solidify and strengthen that foundation.  References [1] Mactavish, J., & Schleien, S. (2004). Re-injecting spontaneity and balance in family life: Parents’ perspectives on recreation in families that include children with developmental disability. Journal of Intellectual Disability Research, 48, 123-141.
Article | family, disability
4 min read
Making the most of the school holidays
When you have a disabled child, the approach of the school holidays can feel like a daunting time. But you may find it helpful to know that your disabled child or young person has certain rights relating to play and leisure, and holidays. Taking a family holiday needn’t be out of the question - it needs more planning and research of course, but there are many organisations that provide holidays and holiday accommodation for families with disabled children. There are also organisations who can help you fund a holiday or leisure activities, see our guide to Holidays, play and leisure below. While the additional planning that goes into arranging a holiday might seem to take away some of the spontaneity of planning a break [3], there are a few different options for families wanting a holiday. One study looking at holidays for families with a disabled child [2] looked at three different ways families can go on holiday:  Individual holidays, where just one parent goes away Joint holidays, where the couple goes away together without the children Family holidays, where both partners and the children all go away together Many parents in the study seemed to enjoy the opportunity to have holidays on their own, making the most of having a bit of personal time and space, without the need to plan too rigorously. If you’d love to get away without the children (and we all need a break from time to time!), there are organisations who run great summer camps for disabled children, with activities like canoeing, biking or archery to suit all levels of ability.Some cater for children with complex health needs and have 24 hour nursing staff and carers on site. This can be a great way for your child to have fun, try new experiences and make friends. Siblings may be able to go too, or may be able to access other holiday camps or activities with their friends. Young carers projects often provide summer holiday activities for siblings - find your local young carers project at: http://www.youngcarer.com/young-carers-services Even if you can’t get away for a longer break, one study found that the majority of disabled children had very similar summer holiday experiences to non-disabled children. For example, ‘buddying’ system pairing disabled children with non-disabled children, helped break down the barriers between disabled children and mainstream activities. Having a non-disabled friend allowed disabled children easier access to youth clubs, cinemas, sports centres, etc. Another example is of two learning disabled teenagers who volunteered in a Saturday club and a holiday club for younger people. They described it as a ‘rewarding’ experience and said it allowed them to integrate more with other children. One 9-year-old boy interviewed in the study said: I wanted to go to the Saturday club… I like spending time with my friends. Once Friday’s over you won’t see them [friends], so I decided to go to Saturday club to be with my friends. [4] Disabled children also talked about going camping with scout groups, or taking family day trips to the beach or to theme parks as highlights of their school holidays. Half of the children in the study had attended organised play schemes, run by local children’s services or by voluntary services. All of them were generally positive about their experiences of the school holidays. But for many of us, going away as a family is key, because it gives us a stronger sense of connection with our family and friends, and also a feeling of being in control, and having more freedom and independence [2]. Leisure and recreational activities can give you a chance to get out and spend time together, which has been proven to improve quality of life [Jo et al]. In fact, memorable and meaningful experiences can be more valuable to your quality of life than material goods. The things you do are more important than the things you have [1].  Whatever your situation, and your needs at this time, Contact's guide to Holidays, play and leisure has information on what play and leisure options may be available, including days out, camping holidays for children, and wish-granting charities, who may fund a disabled child’s ‘wish’, which could be a holiday. It also has information about arranging holidays with disabled children, help to pay for holidays and finding holiday and travel insurance. References: [1] Oppermann, M., & Cooper, M. (1999). Outbound travel and quality of life: The effect of airline price wars. Journal of Business Research, 44(3), 179-188.  [2] Mactavish, J. B., MacKay, K. J., Iwasaki, Y., & Betteridge, D. (2007). Family caregivers of individuals with intellectual disability: Perspectives on life quality and the role of vacations. Journal of Leisure Research, 39(1), 127.  [3] Jo, S., Huh, C., Kosciulek, J. F., & Holecek, D. F. (2004). Comparison of travel patterns of families with and without a member with a disability.Journal of Rehabilitation, 70(4), 38. [4] Knight, A., Petrie, P., Zuurmond, M., & Potts, P. (2009). ‘Mingling together’: promoting the social inclusion of disabled children and young people during the school holidays. Child & Family Social Work, 14(1), 15-24.
Article | parenting together, children, school
5 min read
Back to school blues?
It’s back to school for the kids.Many parents will feel a deep sense of relief when they read that sentence.But for parents with disabled children (and for the family as a whole), September can be stressful [1]. This might be for a few reasons. Any transition is generally more difficult By the time your children are of school age, you’ll have come a long way to understanding their difficulties and complexities, and figured out some kind of schedule and process to deal with those difficulties. Any change to the routine, and entering a new phase away from the norm can be a challenge. New start = new people If your child is moving up a year in school, transitioning to another stage or going to a new school, they may be working with new teachers, classroom professionals, helpers or carers. This can be challenging for two reasons. First, your child needs to readjust to new people, and second, you might feel that you’re pressing the reset button on the experience and learnings that your child made with previous carers and teachers. There’s more to think about If your child is starting a new school, then you also have the pressure of learning about the school system, school routines, and the knock-on effect of these routines [3]. You may also need to consider the role of related service providers, such as physical therapists or speech therapists.If you and your partner are tackling these September challenges together, you might find that the resulting stress has been testing on your relationship. As with any upcoming stressful event, feelings of worry or anxiety can creep in gradually. You may have found that the last couple of weeks have been progressively more difficult between you.You may also find that one of you is more stressed than the other when it comes to your child going back to (or starting) school. According to research, this is very commonly the primary care giver (the person who spends the most time caring for their child). Which makes sense because they’re the ones more likely to carry the lion’s share of responsibility. This can also be a point of conflict in the relationship, because it can feel quite isolating and lonely if you’re anxious alone and carrying that stress by yourself.All of this is normal. But here are three things you can both do: Carry your partner’s concerns, and ask them to carry yours This is about removing feelings of isolation and that feeling of carrying a burden by yourself. If your partner is struggling more than you, it’s really helpful to listen to their fears and worries rather than discounting them. So make sure you empathise with them, even if you feel they’re getting unnecessarily worked up. While humour is a good mechanism to use, make sure you don’t make fun of their anxiety. This can backfire massively and will undo all of your empathy work. If you make light of it, you’re not with them on it. And if you’re not ‘with’ them on it, they’re alone with their stress again. Use the time to see friends and family Evidence has repeatedly shown that keeping connections open with family and friends will strengthen your ability as a couple to handle challenges and stresses. So when your child goes back to (or starts) school, make sure you block out some time for this. Maybe even leave the house to visit them rather than letting them come to you. That way, you can change your environment - an excuse to leave the house is sometimes helpful. Talk about what you’re going to do with your time Planning how you’re going to spend your time will help you switch the mind-set to a more positive one, and to think about yourselves a little. Because getting time together is important. We know parents often have to juggle their leave to look after the children, but if one of you works full-time, you could think about planning some time off work in the week to do something you enjoy together. This could be anything from lunch at the pub, a trip to a museum, walk in the park or just a super-relaxing duvet day together, where you can relax and feel restored. Getting this down-time together is great for you as a couple and as parents. You’ll improve your overall mood and functioning, and you’ll find yourself more able to cope with the back to school blues.   References: [1] Myers and Effgen, 2006 [2] Podvey et al, 2010 [3] Hanson et al., 2001; Dockett and Perry, 2002
Article | parenting, school
4 min read
Choosing childcare
Choosing childcare that suits your child’s specific needs can feel overwhelming. Whatever your circumstances, the following information can help you figure out what you should be thinking about with your partner when you start looking at childcare options. To learn more about where to find childcare for disabled children, how to pay for it, and how you can qualify for free childcare places, visit Contact’s website. There is also have information on your legal rights to childcare, what to do if a childcare setting is not inclusive, and what to do if you’re refused your chosen childcare place. How to choose a childcare setting Childcare settings can provide valuable early education, including the social skills that come from forming positive relationships with other children and adults. This positive real-world experience can help your child to be better prepared for the wider world, whatever their specific needs.When choosing between available childcare options, your decision may be largely instinctive – most parents are drawn to caregivers who seem warm and friendly [1]. This makes sense, given that they are going to be looking after your child. You could also consider the caregiver’s education and the type of curriculum they offer [1]. As you look for a childcare provider who can meet your child’s unique needs and abilities, consider the following questions: Will your child be given the freedom to explore new experiences? Will their curiosity be encouraged? Will they be provided with choices that support their learning and development? [2]. Does the provider have the appropriate training to take your child? Consider things like Makaton language, health and safety, dealing with medication and equipment, and disability awareness training.  As well as finding a childcare provider who offers the best education and support for your child, you will need to find something that fits your family’s schedule [3]. You and your partner will need to agree on what days and times you need the childcare, what you can afford, who works on what days, and how you will drop off and pick up your child. Be prepared to make a bit of a trade-off between your ideal setting and what you can realistically choose. Making decisions together  When you’re making these vital decisions, it’s important to respect each other’s views so you can come to a decision that feels right for both of you. Arguments often happen because we stop listening to each other. If, during an important conversation, you find your thoughts drifting towards what you want to say next, and how to get your own point of view across, you may need to practise your listening skills.Good listening is about taking the time to understand where someone is coming from. If you don’t take the time to listen, your partner won’t feel heard and tension can escalate quickly. Under these circumstances, it’s unlikely they’ll be able to listen to you in return and the conversation will go nowhere. You might find it helpful to draw up a list of pros and cons for each situation you’re considering so you can weigh these up against each other’s personal preferences, and reach a decision that feels logical and fair. What if you disagree? You won’t agree on everything all of the time. If you feel tensions rising, there are ways you can diffuse the situation. It can be hard put yourself in someone else’s shoes during a disagreement because it requires you to step outside of yourself and all your own feelings for a moment. But, if you manage to pull it off, you can often see why your partner’s view makes sense to them, even if it doesn’t make sense to you.  Sometimes you might just need to agree to take some time on your own and pick the conversation up again when you both feel a bit calmer. This can help you to see each other’s viewpoints, which can make your discussions more effective and constructive. Getting the right place  Parents say they often have to be creative and flexible in their approach to finding childcare for their disabled child. It can involve negotiations with local providers that they may not otherwise have had to make. For more information about the law and childcare, including template letters for childcare and funding providers, see Contact. “As Lillie-Mae’s needs increased as she got older, it was mutually agreed between the nursery management and myself that they should apply for top-up finding from the local council to provide one-to-one care services for my daughter”. “My son needs to be fed through a gastrostomy tube so when he started at nursery the staff all received the relevant training from a local community nurse. As a result, I have full confidence in their ability to provide safe and good quality childcare for him”.  “I managed to find a local nursery that was wheelchair accessible and offered one-to-one care, 35 hours a week at no additional cost. This was all funded by the local council”. “I currently pay for a full-time nanny for my children rather than take up the government’s offer of free childcare per week due to a lack of suitable facilities in my local area”.  References [1] Rose, K. K., & Elicker, J. (2008). Parental decision making about child care. Journal of Family Issues, 29(9), 1161-1184. [2] Gamble, W., Ewing, C., & Wilhlem, A. (2009). Parental Perceptions of Characteristics of Non-Parental Child Care: Belief Dimensions, Family and Child Correlates. Journal of Child and Family Studies, 18(1), 70-82.  [3] Rose, K., Johnson, A., Muro, J., & Buckley, R. (2016). Decision Making About Nonparental Child Care by Fathers: What Is Important to Fathers in a Nonparental Child Care Program. Journal of Family Issues, 1-29.
Article | children, disability
4 min read
Disabled children and sex education
Talking to your children about sex and relationships can feel scary, especially if you have a disabled child. But while it might be tempting to put it off, it’s best to start sooner rather than later. Most parents want their children to be well-informed on the subject of sex and relationships [1], and parents of disabled children and young people have a special role in providing support and guidance to enable their children to embrace the challenges of adolescence and grow into informed and confident adults.Throughout this article we use terms such as 'talk to’ and 'discuss' Not all children are able to communicate verbally, and you will know best how to explain some of these ideas to your child. Why do we need to talk about sex and relationships?  There is a tendency to think that disabled people, including those with severe disabilities, do not have sexual feelings, sexual needs and sexual capabilities. But they do. As a parent, you may sometimes feel uncomfortable about this. You may worry that your child will be vulnerable to exploitation, abuse or may become pregnant.Many parents worry that teaching children about sex will encourage them to become sexually active at a younger age. However, children who have received sound sex education are likely to become sexually active later than their peers. There is strong evidence to suggest that children have better outcomes around sexual health when there is good communication with their parents about sex and relationships [2].Defining sexuality as wider than just a physical function is particularly important for young disabled people. A person who is not able to use part of his or her body still has an equal right to full sexual expression. Similarly, a disabled young person should have the same access to sex education, sexual health care, and opportunities for socialising and sexual expression as other young people.Accepting that your child has these sexual feelings, and talking about sex, will help them to understand the difference between a loving relationship and abuse. It may also make it easier for your child to discuss difficult and painful feelings with you. Not knowing and understanding bodily changes and developments can be frightening and bewildering for your child.Remember that, even without ‘formal’ sex education, your child will still learn about sex and relationships in the playground, from the television, or online, where they may pick up any number of myths, misunderstandings and misconceptions. Avoiding the issue of sex and sex education will not make your child’s sexual development, feelings or desires go away, but it may cause unnecessary confusion and worry. When should I start talking about sex and relationships with my child? Sex education in schools is changing to keep up with the way young people form relationships, and you can support your child’s learning by talking to them at home. Think back to your own education – were your school lessons helpful? Did your parents talk to you? Or did you have to learn everything the hard way? What would you like to have learned that you didn’t? Starting the conversation before your child goes through puberty can take the embarrassment out of the subject, and open the door for future conversations. Children are more likely to want to talk to you about sex if they are used to talking openly to you – not just about their condition in general, but other things like money, school work, friends, and so on. Showing an interest in what your child does and says will boost their self-esteem. Encourage your children to talk to you about anything that worries them. Even children with severe communication difficulties may be able to indicate to a family member who knows them well that there are things they are worried about or which make them unhappy.  Start talking to your child early so that problems are less likely to arise – certainly before puberty. Talk openly and casually – while you’re doing something else, like washing up or driving the car – as this gives the message that it is not something secretive or to be afraid of. Be open about your own beliefs and attitudes, but be prepared to discuss them and listen to your child’s point of view. Read books and leaflets and watch videos to inform yourself. When talking about sex, take your child’s condition into account and be realistic. For example, it might take longer; it might mean experimenting a little. Reinforce the fact that the most important aspects of a relationship are love, friendship and mutual respect. Listen without judgement. Try asking your child what they think. Answer questions and don’t be afraid to say: ‘I really don’t know – let’s look it up together’. Don’t bombard your child with questions or talk too much. Many children say it is awful to get a formal lecture on sex or have questions fired at them: ‘I asked a question and she immediately came back with, “Are you having sex then?”. Try and hold onto your anxieties. Answer their questions and respect their privacy. Remember that disabled people have relationships with other disabled people and with non-disabled people. Remember that same sex relationships are as common for disabled people as for non-disabled people. As they get older and become more interested in sex, they’ll find it easier to come to you for support as you’ve already shown that you’re available to talk about it. You’ll also feel more confident about answering their questions [3]. “At special school it was terrible. The assumption was that we wouldn’t have and didn’t deserve sexual relationships”.“I received sex education at home and my disability was not really discussed as an issue. My mum once said to me that she thought it might take me longer than most to get a boyfriend but she was sure I would eventually and she was right!”  Understanding relationships and sex education  Relationships are changing. As young people spend more time interacting online [4] [5], they face new challenges around sex and relationships like sexting, cyberbullying, and the ready availability of online pornography. The way relationships education is taught in schools is changing too. The switch from SRE (Sex and Relationships Education) to RSE (Relationships and Sex Education) is not just an arbitrary name change – it reflects the importance of learning about sex within the context of understanding how relationships work and how to stay safe. As well as factual knowledge about sex and sexual health, your child’s education at school may include lessons about: Different types of relationships. How to recognise and understand healthy and unhealthy relationships. Staying safe online. How relationships can affect health and wellbeing [1].  RSE lessons at school can be a good opportunity for you to build on what your child is learning by starting your own conversations at home.  The changing nature of relationships With the rising costs of living and of higher education, young people face greater challenges to becoming financially independent and are living at home later than previous generations [6]. With reduced funding for social and healthcare services, it may be even harder for disabled young people to access independent living and you may find your children live with you well into adulthood. Staying at home for longer can put further pressure on young people when they start forming relationships of their own. They will have less private time to spend together during important stages of their relationships and long-distance relationships may become more likely [6]. Access to social media can ease a lot of this pressure, providing positive outlets for social interaction. Being able to chat online can be invaluable to people who are shy or struggle to get out and interact with others. It may make it easier for disabled young people to talk to friends, express themselves, and be creative [5]. Understanding how young people use the internet can help you to be a guiding light in their online lives. While there are risks and vulnerabilities associated with being online, such as cyberbullying and controlling behaviour, social media is usually a positive force in young people’s relationships, allowing them to stay in touch more often than they might otherwise have been able to [7]. By being aware of the benefits as well as the risks, you can put yourself in a better position to support your child’s use of online social networks which may improve their experiences of relationships [5]. So, start young. Talk about the positives as well as the risks. Answer their questions honestly; accept that, like most adults, they will become interested in sex; and give them the knowledge that will help them make smart decisions about relationships. Further help If this is a difficult topic for you, you might want to look into the Speakeasy programme and the information provided by the sexual health charity FPA, which aims to increase your knowledge and confidence so that you can develop a more open approach to talking about sex and relationships at home. It is designed to be accessible and considers physical disabilities and learning disabilities in the way it is delivered [8].You can also read Contact’s in-depth guide for parents on Growing up, sex and relationships. Written with parents and young disabled people, it has information on developing your child’s self-esteem, talking about sex and relationships, sexual development and puberty, contraception and STIs, protection from abuse and more. They also have a guide for young disabled people. References [1] Changes to the teaching of Sex and Relationship Education and PSHE A call for evidence - Launch date 19 December 2017. Respond by 12 February 2018 (DfE: London) [2] Kirby, D. (2008). Increasing communication between parents and their children about sex. British Medical Journal, 337, a206. [3] Feldman, S.S., and D.A. Rosenthal. (2000). The effect of communication characteristics on family members’ perceptions of parents as sex educators. Journal of Research on Adolescence, 10, 119–50. [4] Ofcom. (2017). Internet use and attitudes: 2017 Metrics Bulletin. Retrieved from https://www.ofcom.org.uk/__data/assets/pdf_file/0018/105507/internet-use-attitudes-bulletin-2017.pdf [5] Frifth, E. (2017). Social media and children’s mental health: a review of the evidence. Education Policy Institute. [6] Coleman, J. (2010), the Nature of Adolesence. Routledge: London.  [7] Stonard, K. E., Bowen, E., Walker, K., & Price, S. A. (2015). ‘They’ll Always Find a Way to Get to You’: Technology Use in Adolescent Romantic Relationships and Its Role in Dating Violence and Abuse. Journal of Interpersonal Violence. https://doi.org/10.1177/0886260515590787 [8] Kesterton, D, and Coleman, L. (2010). Speakeasy: a UK-wide initiative raising parents' confidence and ability to talk about sex and relationships with their children. Sex Education, 10, 437-448.
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