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.

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.

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 play schemes. 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. 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  “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

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.