If you’re the parent of a disabled child, you might benefit from practising mindfulness in: Your relationship with your partner. Your role as a parent. But before we get into its usefulness and what the research says about it, let’s first take a look at what mindfulness actually is. Mindfulness is a moment-to-moment awareness of thoughts and feelings. Mindfulness has become a popular way for people to let go of their stress, and to ‘find’ themselves in the midst of their daily (and often very busy) lives. Studies have shown that practising mindfulness helps foster positive feelings like contentment, self-awareness, empathy and self-control. It soothes the parts of the brain that produce stress hormones and builds those areas that lift mood [1]. The practice of mindfulness is usually a guided process, and there are a number of exercises that can be used by everyone; you don’t need to attend a class. But you can also practice mindfulness simply by concentrating on your own breathing. There are lots of mobile apps with guided processes for mindfulness. Apps are a helpful option because they can sit in your pocket for the opportune moment – if you are busy looking after your disabled child, convenience is everything. Even if you only have time for 5-10 minutes it can still be very beneficial. It’s well worth doing a bit of research to find an app that you enjoy using, as the practice of mindfulness becomes more powerful when it becomes a daily habit. If you don’t like the sound of the person’s voice or what they are saying, you’ll be less likely to want to listen to the app! Now, let’s get back to the two ways that it can help you, and what the research actually tells us. 1. Your relationship with your partner We all face stressful, difficult and challenging situations, and our relationships would probably be a lot stronger without them. But it’s far too idealistic to expect stressful moments will completely go away; they are a fact of life in any relationship. Families with disabled children have to cope with significant emotional, social, physical and financial pressures, and everyone has different coping styles. Some people cope by focusing on a problem and finding solutions and strategies to improve the situation. Other people focus on finding ways to feel better about a situation by reinterpreting it, distancing themselves, or even denying or avoiding it. Partners can find these differences frustrating. Mindfulness can help us with our reaction to stressful events. By mentally preparing the mind and the body, we can be less controlled by situations when they occur, and we can handle conflict better. This creates some space for us to be the best versions of ourselves for our partners [2]. Mindfulness is also very much geared towards experiencing the present moment, and having a moment-to-moment awareness of the world around us. By being truly ‘present’ with our partners, this can help us become better listeners and focus on how to improve the problems we face. 2. Your role as a parent From a carried out on mothers with children who have autism (65%) and other disabilities (35%), mindfulness led to “significant improvements” in: Stress. Depression and anxiety. Sleep quality. Life satisfaction [3]. While this particular study carried out by the The American Academy of Pediatrics was aimed at mothers, the nature of the results suggest that fathers would also benefit. There’s more research to be done, but for now, the benefits are encouraging. If you want to try out some mindfulness, search for ‘mindfulness apps’ in your search engine to bring up information about free and paid Apps for iPhone or Android, plus reviews for them. Some focus on topics such as relationships, health or sleep. Try out a few to find the right one for you. Have you tried mindfulness for yourself, with your partner or with your family? Did you find that it made a difference? Or are you a little skeptical? We’d love to hear your thoughts – so please do leave us a comment or get in touch via our Facebook page. References [1] http://franticworld.com/what-can-mindfulness-do-for-you/ [2] Carson, J. W., Carson, K. M., Gil, K. M., & Baucom, D. H. (2004). Mindfulness-based relationship enhancement. Behavior therapy, 35(3), 471-494 http://www.sciencedirect.com/science/article/pii/S0005789404800285 [3] Dykens, E. M., Fisher, M. H., Taylor, J. L., Lambert, W., & Miodrag, N. (2014). Reducing distress in mothers of children with autism and other disabilities: a randomized trial. Pediatrics, 134(2), e454-e463 http://pediatrics.aappublications.org/content/early/2014/07/16/peds.2013-3164

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 scene Experience some spontaneity. 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.

In part one of “The positives of being a parent to a disabled child” we found that, despite facing greater challenges, parents with a disabled child often reported that their child’s disability had a positive effect on their lives.  “Indeed, irrespective of the child’s impairment type (eg ASD, cerebral palsy), approximately two out of three parents in this study agreed that, overall, having a disabled child has been positive for their family.” We drew from a study of 175 parents and started looking at what they meant by ‘positive’. Here’s what else parents had to say: “I’ve become a stronger and more compassionate person”  When care and attention is highly demanding, sometimes people find out what they’re really made of, and what their relationship is made of too. Demanding times often reveal the point where your resolve begins to wear thin, or where you start to buckle. As a parent in this situation, the love for your child and your commitment to caring for them could strengthen that resolve in a way that surpasses your own expectations. Just as athletes can tap into a hidden pool of strength in the final lap of a 10,000-metre run, parents also find energy, patience and, endurance they didn’t know they had. As a parent, you face the added mental challenge of knowing you cannot quit or duck out but, much like that athlete, it’s your team of family, friends, and support networks that enables you to keep going.  "As a result of having a child with a disability, our family unit has emerged stronger" This extra energy to keep going can show parents how much they’re willing to give of themselves, which may surprise them. Especially those that perhaps considered themselves to be less caring or compassionate in nature.  “I’ve been able to laugh more, and I’m less bothered by trivial things” Parents facing additional challenges can sometimes gain a focus and a perspective that others do not seem to share. And that perspective – what matters and what doesn’t – can become something that sets those parents free from the humdrum of daily life. This perspective isn’t easily taught either. As people who get bent out of shape over trivial things will tell you, to them they’re not trivial issues – they’re deadly serious ones. Perspective is also coupled with resilience. Having bounced back from a series of challenges, you’re more likely to know what is worth your energy and what isn’t. Without realising it, you’ve probably become very good at estimating the value of your energy, your effort and your time. This might explain why parents with disabled children can sometimes enjoy life more, and laugh at the silly things, rather than be upset by them. Now that you’ve seen what other parents have to say about their experiences and how it’s shaped them, we’d love to hear your story. Have you, your relationship, or your family been changed for the better through your experience? Either leave us a comment, or get in touch with Contact. References [1] David McConnell, Amber Savage, Dick Sobsey & Bruce Uditsky (2015) Benefit-finding or finding benefits? The positive impact of having a disabled child, Disability & Society, 30(1), pp.29-45.

There’s a common cultural assumption that having a disabled child is a negative thing [1]. This is perhaps most noticeable when the child is born and friends and family offer sympathy rather than celebrate your parenthood. This usually comes from a good place, of course - people’s first thoughts might be about how you’ll cope with the challenges coming your way. These expected challenges will vary from parent to parent depending on the individual needs of the child. Here are some common hardships that parents face: Intensive or unpredictable childcare demands. Difficulty getting the right support. Changes to working arrangements (which can link to financial strains) [1]. But, despite all of these challenges and negative assumptions, two out of three parents say having a disabled child has been positive for their family, according to a 2015 study by the University of Alberta, Canada [1]. So what are the upsides? What do these parents mean by ‘positive’? Here are some common responses: “Personal growth and stronger relationships between family members” [1] It’s sometimes difficult to know how far people are willing to go to help you, especially when it comes at a personal cost to them. It’s times like this when you can really find out what your family are made of, and what they’re capable of in terms of support. Some family members can surprise you! Having more help can also mean that you build better relationships with wider family members. Unlike the way families live in other parts of Europe, where wider families share more of everyday life together, in the UK we typically have what’s known as ‘nuclear’ families. That means we keep our ‘immediate’ family very close and the extended family at a distance, meeting up with them only at special events like weddings, birthdays and Christmas time. If your wider family break the nuclear pattern, you might find you have access to a wider pool of support. Another thing about being British is that some of us might not be so good at accepting help; we often reject offers out of politeness or worry that we’re putting people out. By accepting help though, the relationship has a chance to develop in a way that it otherwise might not. Family members might even relish the opportunity to care for you in a practical way that they know you’ll appreciate. Of course, this isn’t limited to family in the blood relative sense. This extends to friends that become very much part of your family network and community. For your child, broadening your community like this can really help them as they grow. “Changes in perspective (e.g. understanding what is important in life and making the most of each day)” [1] Some parents in the study described their perspective as ‘simplified’ (which is a goal that many self-help books are trying to accomplish), and were empowered with a stronger sense of priority. This could be down to the higher demands of attention and focus, which can cause all the fluff and minutiae of life to fade into the background. This fresh perspective is especially helpful for an “always connected” society of people whose attention is often pulled in a million different directions. If you’re experiencing this perspective shift, you might find that it extends to your relationship, giving you and your partner a new realisation of your strength as a couple.  References  [1] David McConnell, Amber Savage, Dick Sobsey & Bruce Uditsky (2015) Benefit-finding or finding benefits? The positive impact of having a disabled child, Disability & Society, 30(1), pp.29-45.

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.