As new parents, you probably know that you won’t have as much time together when the baby comes. But if you’ve been told that your baby might be born with a disability, it could mean you’ll spend even more time and energy caring for your baby and helping them overcome their early difficulties. Estimates suggest that more than half a million children in England alone have a mild to seriously disabling condition or chronic illness [1], so lots of parents across the country are also facing this extra strain. Why you might have less quality time If you’re expecting to be busy looking after your baby and catering to their needs, then you know you’re likely to have less quality time with your partner as a result. Consider the following and see if any of them apply to you: A large part of quality time is talking through the things that matter. In tough times, some people use busyness as a coping mechanism, and the conversation might feel just too difficult to have. Rather than facing the issue and discussing your fears and expectations with your partner, you might instead be busying yourself away with other tasks. There may be a string of healthcare appointments to attend, dealing with the pregnancy and the practicalities of your child’s condition. You may need to make preparations for the baby’s arrival, and spend a lot of time researching ways to modify your home environment for your child. You may both be so wrapped up in the preparation stages that you’re barely spending any time together as a couple. When a child has a disability or vulnerability, they often need extra focus and attention. You may worry that your relationship will drop down the priority scale even further when the baby is born. What you can do to help yourself and your partner You and your partner might find it difficult to discuss how your baby’s disability or health complication could affect your family dynamic and how you will work together to support them. But burying the issue, tiptoeing around it, or pretending it isn’t there, puts you at risk of leaving yourselves unprepared when the baby arrives. It takes courage to talk about the issues that frighten us. If you’re struggling to find the words, try writing down what you’re feeling before you share it with your partner. As things progress, aim to have regular discussions and start making preparations together. It’s important for you both as parents-to-be to work on talking openly and positively about your fears and expectations [3]. Discussing and anticipating the kinds of issues you might face will help you deal with difficult situations when they come up [2]. The extra challenges you face as parents will challenge your relationship too so, even if you need to prioritise your child’s needs, it’s important to look after your relationship, and set aside a little couple time too. 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).

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.

If you have a child with challenging behaviour, you are not alone. There are many reasons disabled children exhibit challenging behaviour, and there are often complex reasons behind a child’s behaviour. In many ways, parents of disabled children lead similar lives to parents of non-disabled children, but the differences can be a source of increased mental distress and exhaustion for parents [1] [2]. When our children have behaviours that challenge us, we have to learn to think outside the box in ways most parents don’t have to contemplate. You may feel under a lot of pressure. The feeling of being to blame, worry about not parenting well, and the feat that others think you are a bad parent are all too common. Parents can feel very alone and it can be a relief to discover that other parents are facing the same issues. If your child has behavioural issues, you are probably investing a lot of energy trying to keep things under control. This requires great organisation skills, and you may be left feeling that you don’t have the time to get everything done [3] [4]. This lack of time and energy can get in the way of your relationship with your partner, [5] [6], so it’s important to make sure you have adequate support in place to help you manage your child’s behavioural issues – not just for your child, but for your whole family. Talk to your partner Talk to your partner about what you’re going through, and the support you’d like to have. If one of you works and the other takes on the main caring duties, you may each feel that the other doesn’t understand what you’re dealing with every day. You may be able to give each other a few new ideas about how to ease the pressure. Or, it may help just to be able to talk about your day. Keep a journal While your child’s behavioural issues might be a result of their condition, there could be social factors at play too [7]. Try keeping a journal of your child’s behaviour and the social situations that surround it. Are there certain times of day, or certain groups of people that make things better or worse? Look for the links between your child’s social interactions and their behaviour so you can identify risk factors and make plans.  Beef up your parenting skills Studies have shown that working on your parenting skills can make things easier for you [7]. Some parenting courses are free but you may have to pay a fee, depending on the provider. Search online for courses in your area, or contact your local Children’s Centre or council to ask what’s available.  Get help from other family members Parents who have support from their extended families tend to cope better [8]. One of the toughest things for parents of children with behavioural issues is the sense of social isolation – speak to friends and family members and let them know that you would benefit from their support. Spend time with other parents One of the greatest sources of support for parents of children with behavioural issues is other parents in similar situations. Seek out other parents in your community, perhaps through your child’s support networks or school. This might feel like something you don’t have time for, but it could deliver its own reward, as community support helps break down your sense of isolation [7]. Being among other parents can also help you decompress by talking about your experiences, and learning from others’ successes [8].  Talk to your child’s school If your child is of school age, speak to their teacher or SENCO. The school is a big part of your child’s support network, so the staff should be aware of any behavioural issues. Ask them to work collaboratively with you and to keep an eye on things while you can’t. Parents tend to cope better when they have positive experiences with schools [8], so this is an important relationship to maintain.  It might take a while to build up a support network, so go one step at a time, and be easy on yourself. Lean on those closest to you for support first, and then branch out slowly. As things ease up, and your child’s support network grows, you and your partner will start to feel more in control. You may even find a few moments to dedicate to yourselves and each other. Contact a Family has a free guide for parents available from our helpline on 0808 808 3555 or free to download. Understanding your child's behaviour looks at: Why children behave in different ways. How to set the scene for good behaviour, recognising triggers and finding strategies. Managing specific issues, like tantrums or biting. Looking after yourself - people and organisations who can support you and your family. Puberty and the teenage years, plus much more. References [1] Parish, S. L., Rose, R. A., Grinstein-Weiss, M., Richman, E. L., & Andrews, M. E. (2008). Material hardship among U.S. families raising children with disabilities. Exceptional Children, 75, 72–91. [2] Plant, K. M., & Sanders, M. R. (2007). Predictors of care-giver stress in families of preschool aged children with developmental disabilities. Journal of Intellectual Disability Research, 51, 109 –124. [3] Worcester, J. A., Nesman, T. M., Raffaele Mendez, L., M., & Keller, H. R. (2008). Giving voice to parents of young children with challenging behavior. Exceptional Children, 74, 509–525. [4] Resch, J. A., Mireles, G., Benz, M. R., Grenwelge, C., Peterson, & R., Zhang, D. (2010). Giving Parents a Voice: A Qualitative Study of the Challenges Experienced by Parents of Children With Disabilities.  Rehabilitation Psychology, Vol.55(2), 139-150. [5] Brannen, M. A., & Heflinger, C. A. (2006). Caregiver, child, family, and service system contributors to caregiver strain in two mental health service systems. The Journal of Behavioral Health Services and Research, 33, 408 – 422. [6] Seltzer, M. M., & Heller, T. (1997). Families and caregiving across the life course: Research advances on the influence of context. Family Relations, 46, 395– 405. [7] Sanders, M. (1999). Triple P-Positive Parenting Program: Towards an Empirically Validated Multilevel Parenting and Family Support Strategy for the Prevention of Behavior and Emotional Problems in Children. Clinical Child and Family Psychology Review, Vol.2(2), 71-9. [8] Ludlow, A., Skelly, C., Rohleder, P. (2012). Challenges faced by parents of children diagnosed with autism spectrum disorder. Journal of Health Psychology, Vol.17(5), pp.702-71.

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.

When you’re the parent of a disabled child, there’s a lot of information to absorb. Some of this can be useful but, like all parents, you may also find yourselves on the receiving end of unsolicited tips, advice, and wisdom. When it comes from your in-laws, it can be hard to know where to draw the line. In-laws can be a be a valuable source of emotional, financial, and practical support [1]. Depending on where they live, they can be a useful source of childcare, and play a valuable part in helping your children develop new skills [2]. Many can represent a calming influence during new and stressful situations that they already know their way around. As a parent of a disabled child, the issue becomes more complex. There are medical, social, and educational factors to consider that your and your partner’s parents may never have had to deal with before. Even if their parenting expertise hasn’t gone out of date, it may not be relevant to your child’s specific needs. However difficult your in-laws might be, it’s worth remembering that they have raised children too – they even raised someone that you fell in love with! But that doesn’t mean they’re always right. If their attempts to offer support just lead to arguments, the support itself may not be worth the emotional price you pay for it [3]. As the parent, it’s up to you to accept or reject offers of support. While your in-laws may have some useful nuggets, you and your partner are the ones who have access to the full picture as to what’s best for your child. Annoying in-laws If your in-laws are constantly texting bits of unhelpful advice, or if they come to the house and criticise a routine that you’ve been working hard to establish with the support of your child’s care team, then you need to find a way to respond. While the most obvious and possibly most satisfying response is to tackle them directly, this could lead to unnecessary arguments. Even when you know you are right, you still run the risk of turning your in-laws against you and upsetting your partner. The most effective way to deal with interfering in-laws is to talk to your partner first [4]. Speak openly to your partner about how you feel and why you’re concerned. As with any difficult conversation, start by talking about your own feelings, stick to the issue at hand, and give your partner a chance to digest what you’ve said. Don’t criticise or attack your in-laws – your partner has had to deal with them a lot longer than you have, and you don’t want to provoke a defensive reaction! Differences of opinion When you become parents, your priorities shift and your relationships change. This can include a rise in conflict with your in-laws. If you get on very well with them, this might just mean a few tiffs but, if you’re already prone to rowing, things could turn very stormy [5]. This makes sense as there’s more at stake than before – the little things you used to be able to ignore now need to be addressed head-on. Like you, your parents-in-law want the best for your child. Unlike you, they’re not around every day to make fully informed decisions about what’s actually best. If they start getting more involved than you want them to, it can feel intrusive and controlling. This can lead to problems between you and your partner, as you battle to strike the right balance [5]. Creating an effective boundary can be difficult. You and your partner will have to decide what’s acceptable and what’s not. You might want to agree a strategy in advance – for example, any time your parents or in-laws offer tips, thank them, and let them know you’ll consider their advice. You and your partner can then discuss the advice in private and make an appropriate decision. Sharing information It can be very helpful to update your in-laws on any information you learn about your disabled child. This could include medical information, or any strategies you’ve learned from your paediatrician, speech and language therapist, or other trusted provider like a charity or the NHS. If you have this information written down or printed out, show it to them, or ask your partner to. Discuss the information to help them understand what you’re trying to achieve with your child. It may also help them understand that you and your partner are in touch with the authoritative experts so they do not need to worry constantly that you may be doing the wrong thing! Getting to know your in-laws better Being on good terms with your in-laws can have unexpected positive side effects. One study found that couples who have closer ties to their in-laws tend to be happier and more satisfied with their own relationships [6]. So, rather than shutting them out, ask yourself it it’s possible to get to know your in-laws a little better. Take the opportunity to learn more about your partner’s background; encourage your in-laws to talk about the family history and customs. These conversations can help you form a bond, and may even have a positive impact on your relationship with your partner [7]. If you continue to struggle with your in-laws, take some comfort from the possibility that things can improve over time. Even the most vocal in-laws are capable of changing and coming around to accept your way of doing things. References [1] Goetting, A. (1990). Patterns of Support Among In-Laws in the United States A Review of Research. Journal of Family Issues, 11(1), 67–90. [2] Enyart, S. (2012). The transition to extended family: Examining the links between turbulence and children-in-laws’ goals, topic avoidance, and relational outcomes. University of Illinois at Urbana-Champaign. [3] Schober, P. S. (2013). Gender Equality and Outsourcing of Domestic Work, Childbearing, and Relationship Stability Among British Couples. Journal of Family Issues, 34(1), 25–52. [4] Rittenour, E. C., and Kellas, K. J. (2015). Making Sense of Hurtful Mother-in-law Messages: Applying Attribution Theory to the In-Law Triad. Communication Quarterly, 63(1), 62–68. [5] Bryant, C.M., Conger., R.D., and Meehan., J.M. (2001). The Influence of In-Laws on Change in Marital Success. Journal of Marriage and Family, 63(3), 614-626. [6] [Timmer, S.G., and Veroff, J. (2000). Family Ties and the Discontinuity of Divorce in Black and White Newlywed Couples. Journal of Marriage and Family, 62(2), 349-361.   [7] Serewicz, M.C.M., Hosmer, R., Ballard, R.L., and Griffin, R. A. (2008). Disclosure from In-laws and the Quality of In-law and Marital Relationships. Communication Quarterly, 56(4), 427–444.

For any parents, having another child is a big decision that requires serious consideration. So, if you are thinking about having another child, it’s likely your discussion will be affected by the financial, social, and health factors already in play in your lives. As parents of disabled children, you may be feeling this even more strongly. Studies have shown that parents raising children with disabilities are more likely to experience mental health issues such as anxiety, stress, and depression, (Stoneman, 2007) as well as relationship difficulties and problems at work (Simsek et al., 2015). One study asked parents of disabled children their thoughts around having another child. The main concerns included: Having less time to care for existing children Not having enough money to care for another child Risk of health problems in the next child (Simsek et al., 2015) Siblings You may also be concerned about what kind of life another child would have as the sibling of someone who requires regular extra care. You might be worried that your next child would have a stressful life, or that you wouldn’t be able to dedicate as much time to them as you would like to. This is certainly worth considering - some studies have shown that siblings of disabled children can experience increased stress in their lives (Murray, 2000) (Javadian, 2011). However, there is also evidence of siblings feeling a positive benefit of living with a disabled sibling. Children who are involved in the care of disabled siblings can grow up learning to be more helpful and compassionate than other children, and may also develop greater emotional awareness (Javadian, 2011) (Fisman et al., 1996). How will having another child affect your relationship? While parents of disabled children are statistically more likely to separate (Gardener and Harmon, 2002) (Patterson, 2002), many couples have a much more positive experience, and find that their relationship is strengthened and their bond solidified. Parents of children with additional needs have to rely on each other for support, and this can benefit your couple relationship, bringing you closer together (Simsek et al., 2015). It’s likely that you’ll have a lot to think about as you make a decision around whether or not to try for another child. However, depending on your experiences, you may feel more confident knowing that you’ve made it this far, learning and growing together. Whatever other factors you need to consider, the fact that you are thinking about it at all could be a positive sign about the strength of your relationship as a couple, and your capacity as parents. References Cahill, B. M., & Glidden, L. M. (1996). Influence of child diagnosis on family and parental functioning: Down syndrome versus other disabilities. American journal of mental retardation: AJMR, 101(2), 149-160. Fisman, S., Wolf, L., Ellison, D., Gillis, B., Freeman, T., & Szatmari, P. (1996). Risk and protective factors affecting the adjustment of siblings of children with chronic disabilities. Journal of the American Academy of Child & Adolescent Psychiatry, 35(11), 1532-1541. Gardner, J., & Harmon, T. (2002). Exploring resilience from a parent’s perspective: A qualitative study of six resilient mothers of children with an intellectual disability. Australian Social Work, 55(1), 60-68. Javadian, R. (2011). A comparative study of adaptability and cohesion in families with and without a disabled child. Procedia-Social and Behavioral Sciences, 30, 2625-2630. Kearney, P. M., & Griffin, T. (2001). Between joy and sorrow: being a parent of a child with developmental disability. Journal of advanced nursing, 34(5), 582-592. Marsh, J. C. (2003). Editorial: Arguments for Family Strengths Research. Social Work, 48(2), 147-149. Murray, J. S. (2000). Attachment theory and adjustment difficulties in siblings of children with cancer. Issues in Mental Health Nursing, 21(2), 149-169. Patterson, J. M. (2002). Integrating family resilience and family stress theory. Journal of marriage and family, 64(2), 349-360. Şimşek, T. T., Taşçı, M., & Karabulut, D. (2015). Desire to have other children in families with a chronically disabled child and its effect on the relationship of the parents. Turkish Archives of Pediatrics/Türk Pediatri Arşivi, 50(3), 163. Stoneman, Z., & Gavidia-Payne, S. (2006). Marital adjustment in families of young children with disabilities: Associations with daily hassles and problem-focused coping. American Journal on Mental Retardation, 111(1), 1-14.

When your child has a disability or long-term illness, hospital stays might be a familiar part of your life. But hospitals can be stressful places, and managing a stay can be tough for you as parents [1], both practically and emotionally.You may worry about leaving your child in the care of hospital staff, particularly if your child has communication difficulties and important decisions are being made [2]. Younger people with learning disabilities can often find it difficult being understood in hospital settings [3]. Dealing with hospital staff If you’re having difficulty accessing the support and services your child needs, it can have a significant impact on you and your partner [4]. It can sometimes feel like hospital staff don’t know how to offer the care your child needs [5] and you may find yourself going over the same things as you are passed from one practitioner to the next. One way to ensure your child’s needs are properly considered is by using a hospital or communication passport for your child.A hospital passport is a booklet that you can use to pass on crucial information about a child or young person with additional needs. It contains information about their condition, medications, likes and dislikes, and essential information if an emergency happens. This can ensure that all the professionals who come into contact with you and your child have the same information without you having to keep explaining things. This can be particularly useful for children with a learning difficulty. Mencap have a hospital passport for children with a learning disability on their website: www.mencap.org.uk/advice-and-support/health/our-health-guides.Even the most well equipped hospitals cannot provide the round-the-clock care that many severely disabled children need, so children might be completely dependent on others to stay comfortable and happy in hospital. As their mum or dad, you may need to be by their side for much of the day to pick up the extra care that nursing and clinical staff can’t offer. This can include practical things, but also just talking to them, and keeping them reassured and entertained.You may need to ask hospital staff to have patience with you. Having a child in hospital can be draining for parents [4] and you may not be at your best when trying to communicate important things to the staff. When you feel that hospital staff aren’t very understanding about your experiences, it can leave you feeling unsupported, and worried about the decisions that are being made while you’re not there [5].At times like these, you and your partner might need to make a special effort to support each other. It can be helpful to spend five or ten minutes at the end of the day, talking about what you’ve found difficult and what has gone well. This can help give you a better understanding of each other’s experiences, while getting emotional support from the person who is going through this with you. It can also give you a chance to gather your thoughts and reflect on the day. Support while your child is in hospital Having a child in hospital can sometimes open the door to services and support you may not have accessed before. Make sure you enquire about specialist support. Some charities work in hospitals providing condition-specific nurses, such as Roald Dahl nurses who can visit and support you, and provide follow up care when you’ve left the hospital setting.There are also charities who take applications for financial support, like grants to families with a child in hospital. See https://contact.org.uk/help-for-families/information-advice-services/money-debt/grants-loans-welfare-schemes/ for a list of grant-giving charities, or contact the helpline for a copy on 0808 808 3555 or helpline@contact.org.uk.The hospital’s Patient Advice and Liaison Service (PALS) can offer parents confidential advice, support and information. They can help you with health-related questions and help resolve concerns or problems when you're using the NHS. You can usually find their office in or near the main entrance of the hospital.Contact has parent advisers based at six children's hospitals across the UK, providing families with emotional and practical support. Parents can drop by the information stands or ask someone to come to the ward. Contact currently work at: Birmingham Children's Hospital. Royal Manchester Children's Hospital. Alder Hey Children's Hospital. Great North Children's Hospital. The Evelina Children's Hospital. Great Ormond Street Hospital. Leaning on friends and family If you are stressed, it can have an impact your child’s health and behaviour [1], so it’s important to make sure that you and your partner are well supported. One of the best ways to cope with stress is to lean on your friends and family [1] [6].Sometimes talking to someone outside of the situation can help you let off steam in a way that talking to your partner can’t. You may also be able to ask for practical help, like lifts to or from the hospital, picking up other children from school, or helping you out with the housework for a while. It can be hard to ask for help, but try to be kind to yourself and remember that lots of people enjoy feeling needed and will be happy to support you when they know what you’re going through. Staying with your child If your child is having a long stay in hospital, you can help them by keeping things as normal as possible, like making sure they have access to schoolwork and home comforts [1].If your other life commitments allow it, you may be able to stay in or near the hospital with your child. Most hospitals allow or even encourage this and some have funded schemes to offer low-cost accommodation nearby [7]. There are also centres like Ronald McDonald House which have been set up specifically to allow your family to stay together while your child is in hospital. Staying close to your child can take some of the worry out of the situation [7] and help you feel more confident about the care your child is receiving [2]. It may also put you in touch with other parents who are in similar situations [7]. Looking after your relationship However you decide to manage things, you and your partner will probably have to make some compromises. Set aside some time to work things through as a couple – make a list of what needs doing and work out where it’s possible to free up time and resources to make things work.You may be able to divide things up equally, or one of you may have to do the majority of the heavy lifting while the other keeps working. Agree a strategy that works for both of you and make a plan to review it and check if it’s working. Talking things through can help you see how each other is involved, and give you both a greater sense of fairness. Coming home Before your child comes home, make sure you contact the hospital social work department to arrange your child’s care needs when they are discharged. The hospital should liaise with your local authority to make sure you and your child have everything in place. If your child’s care needs have changed, be prepared to start a new routine rather than trying to recapture the old one. No one can pretend that having a child in hospital is anything but a stressful experience, and it’s normal for feelings of stress and worry to continue even after your child is discharged [8], so give yourselves a chance to adjust afterwards.  References [1] Commodari, E. (2010). Children staying in hospital: a research on psychological stress of caregivers. Italian Journal of Pediatrics, 36, 40. http://www.ijponline.net/content/36/1/40  [2] Gumm R, Thomas E, Lloyd C, et al. (2017) Improving communication between staff and disabled children in hospital wards: testing the feasibility of a training intervention developed through intervention mapping. BMJ Paediatrics Open 2017;1:e000103. doi:10.1136/bmjpo-2017-000103 [3] Care Quality Commission (2017) NHS Patient Survey Programme.Children and young people’s inpatient and day case survey 2016: Statistical release. http://www.cqc.org.uk/sites/default/files/20171128_cyp16_statisticalrelease.pdf [4] Care Quality Commission (2012) Health care for disabled children and young people. A review of how the health care needs of disabled children and young people are met by the commissioners and providers of health care in England. https://www.cqc.org.uk/sites/default/files/documents/health_care_for_disabled_children.pdf [5] Hagvall, M., Ehnfors, M. and Anderzn-Carlsson, A. (2016) Experiences of parenting a child with medical complexity in need of acute hospital care. Journal of Child Health Care, 20(1), pp.68-76. DOI: 10.1177/1367493514551308 [6] Kersh, J., Hedvat, T.T., Hauser-Cram, P. and Warfield, M. E. (2006), The contribution of marital quality to the well-being of parents of children with developmental disabilities. Journal of Intellectual Disability Research, 50: 883–893. doi:10.1111/j.1365-2788.2006.00906.x [7] Franck, L.S., Ferguson, D., Fryda, S., & Rudin, N. (2015). The child and family hospital experience: Is it influenced by family accommodation? Medical Care Research and Review, 72(4), 419-437. [8] Wray, J., Lee, K., Dearmun, N. and Franck, L. (2011) Parental anxiety and stress during children’s hospitalisation: The StayClose study. Journal of Child Health Care, 15(3), pp.163-174. DOI: 10.1177/1367493511408632