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.

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.

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.

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

What is happening? For many separated parents, as their relationship with their partner comes to an end, their parental partnership continues forward. Even if there’s no love (or at least, no romantic love) left between one another as parents, the shared love for your child remains and grows. But of course, such parental partnerships are rarely easy or straightforward, and for many parents of disabled children, extra stresses and complexities are likely to pop up. These can cause friction and disagreements.These disagreements will vary parent to parent, often depending on the condition of the child. But, according to research, the two main points of disagreement for separated parents of disabled children are [1]: The medical treatment their child’s needs. The educational approach for their learning needs. “If parents disagree on treatment or educational approaches for their special needs child, separation and/or divorce usually magnify these differences.”[1] In other words, if you struggled to agree on these subjects when you were a couple, there's a good chance it will be harder to agree when you're separated. How can I help? If your child’s medical treatment is being discussed with a doctor, a specialist, or healthcare member, make sure that you encourage one another to attend appointments together wherever possible. It can be helpful to carry the mind-set that your partnership needs work and effort in the same way that your relationship once did. So, if it feels uncomfortable to attend medical and healthcare meetings together, it may be worth pushing through the awkwardness and the tension for the sake of improving the partnership.Consider using an online parenting plan with your ex-partner, and choose one that allows you to customise it for specific issues. Parenting plans allow you to choose your own category, e.g. “Medical treatment for our child”, where you can write down your suggestions and proposals. Your partner would then respond and either agree or disagree with what you’ve put forward. Eventually, you can reach joint decisions and make agreements while keeping emotions and friction to a minimum.Whether you’re talking face-to-face, via a parenting plan or through a series of texts, try to place a real emphasis on respecting one another and using clear communication. It’s going to be difficult to separate your emotions, but your child and your parental partnership with your ex will benefit from your efforts.If you’re going through a separation or a divorce, you can help to minimise the negative effects that separation can cause on your child’s development and well-being by focussing on the partnership with your ex-partner and the shared love of your child. And, by being active and finding ways to work together as a partnership, your ex-partner may be more responsive and agreeable, knowing how much you want to make the parent partnership work. References: [1] Pickar, Daniel B., and Robert L. Kaufman. “Parenting Plans for Special Needs Children: Applying a Risk-Assessment Model.” Family Court Review 53, no. 1 (January 1, 2015): 113–33.

When your child has a disability, the stress of parenthood can be amplified. You may still be reeling from the shock of your child’s diagnosis, or from trying to get clarity on what their condition involves. The impact of parental stress on your relationship can be hardest to cope with in the early years [1]. The first few years of your child’s life are essential for the child’s development, and also for you as parents. Learning some coping skills early on can make you more resilient, setting up the way you’ll deal with stressful situations in the future, so it’s worth spending some time getting it right [2]. Learning how to cope Coping is a skill, and – like other skills – it can be learned and improved. Think of coping as the set of thoughts, feelings and behaviours that get you through difficult or stressful situations [3]. It’s much easier to change your thoughts than your emotions, so the first step towards learning to cope with difficult situations is to approach them with the right attitude.When you’re stressed, you might feel like running away and hiding, or you might just wish things were different. While this might help in the short term, you probably already know that it’s not an effective long-term solution. Take the time to talk things through with your partner and look for solutions. Try to take on an attitude of problem-solving as you face each issue – getting into the habit of doing this will help you cope and support each other better in future [4].For example, if your child is prone to bouts of anger, you may feel tempted to try and placate your child, or avoid situations where an outburst would be particularly embarrassing. This can become extremely stressful for parents who have a child who has, or is developing, behaviour that challenges. It’s so important to seek help early.Discussing problems while they’re not actually happening can make it easier to stay calm when they do happen. With the example above, you might find it gets easier to keep your cool, and hold the space while your child’s anger runs its course, leaving a way through to understanding the cause of the outburst.When you have time, find out about any help you may be entitled to, and strategies you can use to deal with their behaviour. Have a look at Contact's information on behaviour, including their guide to Understanding your child’s behaviour. Then you and your partner can sit down and talk about how you are going to deal with the next outburst. You can also develop a long-term strategy to deal with behaviour issues.This particular issue may not reflect your experience, but it can help you see how you can start to approach your own difficult situations in a different way.Learning to cope with problems this way can help you build your resilience over time, protecting you against some of the stress associated with parenting a disabled child, and making you less prone to argue with your partner. You may have to take it turns being ‘the strong one’ – knowing that you’re looking out for each other will give you a better chance of keeping up this positive attitude as a couple [4].As an added benefit, you may also find that you can pass these skills on, and teach your children how to cope with anxious feelings and stressful situations. When your children are also equipped to cope with the challenges they face, it can take pressure off the whole family. They will be able to have more independence, and you will feel more confident in their abilities [3]. Learning to be a parent For many of us, becoming a parent will be the first time we ever have to deal with very young children. Parenting is one of the hardest and most rewarding jobs we’ll ever do, and most of us learn ‘on the job’.Parents of disabled children have said that attending a parenting programme has been helpful in improving the quality of their parenting, and their understanding of parent-child relationships. There is also good evidence to show that participation in a parenting programme improves the mental health and wellbeing of the parents themselves as well as of their children [5]. Parenting programmes may be run by local authorities, charities, faith centres, or private individuals. If you feel it would be helpful, you can search for courses near you on the National Institute of Parenting website. Sharing the burden During the early years, it can also be useful to figure out how you’re going to cope with all the extra work that having a young child in the house creates for you and your partner. Much of the conflict between new parents comes from a feeling that household chores and parenting responsibilities aren’t being shared fairly [6]. Talk about how you are going to share these responsibilities. You won’t necessarily be able to divide things up equally, particularly if one of you is working full time and the other spends more time at home, but having the discussion can help you both feel that things are fairer. It can also help you prepare for the lifestyle changes as you learn to adjust to supporting your child’s needs.As time moves on, your child’s needs will change. Keep talking to your partner, and make sure you’re both still happy with the arrangements – if you need more help, ask for it, and if you’re worried about how well your partner is coping, check in to see if what else you can do. Early years education Finally, take some of the burden off by making use of your local service providers. Early years education can help your child learn valuable confidence-building and social skills like playing with other children, taking turns, and sharing [7], all of which supports their cognitive development and independence, and can help you feel more confident and less stressed.All early years education providers must take steps to include and support disabled children, and children who have, or may have, special educational needs. They are required to register with Ofsted if they offer free early years education places. For information about your options, including nurseries, playgroups or childminders, and how your child should be supported up to the age of five, see Contact's information on help in the early years.   References [1] Durtschi, Jared A., Kristy L. Soloski, and Jonathan Kimmes. 2017. ‘The Dyadic Effects of Supportive Coparenting and Parental Stress on Relationship Quality Across the Transition to Parenthood’. Journal of Marital and Family Therapy; Hoboken 43 (2):308–21. [2] Douglas, Tracy, Bernice Redley, and Goetz Ottmann. 2016. ‘The First Year: The Support Needs of Parents Caring for a Child with an Intellectual Disability’. Journal of Advanced Nursing 72 (11):2738–49  [3] Frydenberg, E., Deans, J. and Liang, R. (2014) Families Can Do Coping: Parenting Skills in the Early Years Children Australia, Volume 39, Number 2, pp. 99–10. [4] Peer, Justin W., and Stephen B. Hillman. 2014. ‘Stress and Resilience for Parents of Children With Intellectual and Developmental Disabilities: A Review of Key Factors and Recommendations for Practitioners’. Journal of Policy and Practice in Intellectual Disabilities 11 (2):92–98. [5] Parsonage, M., Khan, L., and Saunders, A. (2014). Building a better future: The lifetime costs of childhood behavioural problems and the benefits of early intervention. Centre for Mental Health [6] Newkirk, Katie, Maureen Perry-Jenkins, and Aline G. Sayer. 2017. ‘Division of Household and Childcare Labor and Relationship Conflict Among Low-Income New Parents’. Sex Roles 76 (5–6):319–33. [7] Griggs, J. and Bussard, L. (2017). Study of Early Education and Development (SEED): Meeting the needs of children with special educational needs and disabilities in the early years. London: DfE.

What am I dealing with? While some disabilities and conditions can be diagnosed early on in a child’s life (perhaps even during the pregnancy), others can take a lot more time, which can be difficult for parents who are waiting to find out. Sometimes parents have this wait for several months or even years after the baby is born – this is particularly common for children with an Autism Spectrum Disorder (ASD).This time of limbo can also be a time of friction for divorced or separated parents, as they might argue about what issue the child has or how to cope in the meantime. Why is communication so difficult? ‘Disability’ is a very broad term, and each disability or condition will affect the individual and their families in different ways. Where certain conditions are harder to diagnose like autism or ADHD, studies have shown divorced parents will typically argue over whether or not the child has the condition they suspect(1). They also argue a lot about the steps that need to be taken to getting a diagnosis. As the loving parents of your baby, one (or both) of you might be struggling to accept that your baby could have a disability and feel reluctant about having your baby tested. This form of denial means that, as separated parents, you might also find it difficult to talk about things practically and realistically. Parents that support their child’s additional needs as a couple living together can create routines, rules and a home environment that work for the child. Whereas living apart means that two sets of rules and routines are running separately. For a child who has ADHD or ASD, this can be an even greater problem as they may not adapt well to change. Even following a diagnosis such as ADHD or ASD, it’s not as though there’s then a right or wrong way of raising your child. There’s no rulebook – it’s all about learning about your child as a person and how they handle their condition, then applying the medical knowledge of the condition where you can. And because there’s no right way or wrong way, one parent may think they understand the condition better than the other, which can lead to conflict. If one parent spends more time than the other with their child, they may feel they have closer first-hand experience of the disability. This can cause one parent to feel they are better informed to take lead in the decision-making. How do I help the situation? Learning to communicate better is even more difficult if you’re divorced or separated. But communicating better with your ex could make everyone’s lives a lot easier, including your child’s. Coming to terms with a potential disability is tough for any parent. And if your partner is showing signs of denial, you will need to talk to them sensitively given that they are using this denial as their coping mechanism. Try to approach the subject with care and take it slowly – they may just need some time to come around. Always try to be positive, even though this is a tough conversation to have. While your romantic relationship is over, the relationship still functions in a different capacity as parents – that relationship still needs work and effort. Although this is certainly easier said than done, try to put aside your feelings for the good of your child, and encourage them to do the same. You can still show one other respect, particularly where shared decisions need to be made. A recent US study found that: “In many divorced families, conflicting parental viewpoints are especially apparent when children do not have equal time in both households (1)*.” In other words, when the child spends more balanced time with both parents in their homes, the parents are less likely to clash. This likely comes down to the parents feeling that there’s a shared effort where both parents are playing their parts. Another way you could improve communication is with the help of a parenting plan – one that you don’t have to complete together in the same room. Parenting plans enable you to work together separately in a more seamless way to help reach decisions without conflict or fuss. References [1] Pickar, Daniel B., and Robert L. Kaufman. “Parenting Plans for Special Needs Children: Applying a Risk-Assessment Model.” Family Court Review 53, no. 1 (January 1, 2015): 113–33. * Note: this research relates specifically to parents who have children diagnosed with ADHD.

Moving house is one of the most stressful things a family can go through. When you have a disabled child there are many extra factors to consider, on top of the usual expense and logistics of moving to a new location.  One of your biggest considerations will be your child’s support network, which includes not only schools, medical care and other local services, but also the support you get from family and friends. Even if you’re moving specifically to be closer to family, you may be moving away from other support that you’ve learned to rely on. When moving to a new location, you can help make the transition smoother by setting up as much as possible in advance. You may find it helpful to consider the following areas of support [1]. Access and information Find out where your new local services will be and how to access them. You should be able to find information about services and support for disabled children on any local authority website. If you are receiving services and support from the local authority where you live now, make sure you talk to them about transferring to your new local authority, as you may have to undergo a new assessment. There’s an expectation that the local authority where you live will at least liaise with the new authority about your child’s needs and support in the interim. You may also want to find out about what any registration processes and what you will have to do. If there is a waiting list, find out how long you are likely to have to wait and, if appropriate, get on the list as soon as possible. Cost Affordability is one of the main barriers between parents and services. Check if there are cost differences in services between where you live now and where you are moving to. Unfortunately, if you are receiving payments or funding for certain services now, your new local authority is not under any obligation to provide the same level of support or help in the interim while waiting for a new assessment to be carried out. Seek advice about this from the Contact helpline on 0808 808 3555, helpline@contact.org.uk. You may wish to factor this into your budget if you are able, and, if necessary, work out where you can make savings. Schools One of the biggest challenges you are likely to face is how to integrate your child into school and the wider community. How easy or hard this is for you will depend largely on where you are moving, and the age of your child.  Many parents find it difficult to push back against the status quo, concerned that they might be thought of as a ‘trouble parent’ [1], but it’s important to find a balance. Your child’s school experience is an essential part of their wellbeing and will help them to develop social skills for forming relationships as they get older. If there’s anything you’re not happy with, ask for something to be done about it, or consider other options. You’ll probably have started looking at schools as soon as you started considering the move. It’s also worth investigating community activities and other social opportunities for your child. If your child is receiving extra help at school, for example they have a statement of special educational needs, Education, Health and Care plan or Coordinated Support Plan, speak to the teacher responsible at school, and find out how the move to a new school will be managed. Again, seek advice from Contact’s education advice line about this on 0808 808 3555, email helpline@contact.org.uk Family support The work that goes into parenting a child with disabilities can take up so much of your time and energy that friends and family end up taking a back seat [2], but it’s impossible to put a value on having people living nearby whom you can rely on. Support from friends and extended family support can help you cope with the additional time demands and unpredictability of parenting [1] and, most of the time, it doesn’t cost anything. If you haven’t yet decided where to move, consider areas that are near supportive friends and family. They may even be able to offer advice on local services. Don’t assume they’ll always be able to support you though – other people shouldn’t be the only reason you move. Remember that if they decide to move away in a year’s time, you’ll still have to live in the new location.  It’s important to access whatever support is available, as it can allow you to spend quality time with your other children, and with each other as a couple [1]. If you are moving somewhere you won’t have family locally, make sure you check out options for respite care and other support such as counselling, sibling support and childcare. If funded support isn’t available, calculate the likely costs of any support you would have to pay for, and factor this into your moving plans. General tips Moving is stressful for everyone. These general tips may help to take some of the pressure off once you are ready to make the move. Look after yourselves Remember that you and your partner will also be affected by the upheaval of the move. During the build-up, eat well and try to get enough sleep. Don’t forget to think about activities that you can do in your new place, and make plans to explore the new area together. Clear your schedule During the week of the move, take some time off work and arrange for someone to look after the children, so that you can focus on getting everything else sorted. Let yourself off the hook You’re probably going to feel anxious and stressed for a bit, so don’t beat yourself up for not being perfect. Give yourself some space. Do some slow breathing. Talk to someone. Accept help If anyone offers practical support with your move, say, yes! Hand over a copy of your to-do list if you have to – just let people help. Focus on the positives Remind yourself of why you are moving – better job prospects, a nicer location, or perhaps just a home that suits your family’s needs better. Whatever it was that led you to make the decision to move, keep it in mind, and look forward to the things that matter most. References [1] 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, 2010, 55(2), 139-150.  [2] 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.

A child who does not sleep well can affect the whole family. Parents can be left exhausted, unable to think clearly and struggling to cope with their daily activities. The child can be left feeling over tired or over-active, both signs of lack of sleep. Brothers and sisters are also affected, feeling tired at school, and sometimes resentful towards the sibling disturbing their sleep. If this continues over a long period of time, it can have an adverse effect on the health and wellbeing of all members of the family. For you and your partner, sleep may become a kind of currency for your day-to-day living, that you need to make everything else in your life work and click together. Without sleep, it’s harder to manage our emotions, to be logical, to complete daily tasks, and to be loving to each other. There’s not much energy leftover for you as a couple. How you can help your relationship: Whatever the cause of your child’s sleep difficulties, it’s wouldn’t be normal if you didn’t feel stressed and irritable when you’ve both been losing sleep [1]. Sleep deprivation can also make you worse at managing your own emotions. This is partly due to being more easily irritated - you’re more likely to quick-fire an emotion before you’ve allowed yourself the space to think through your reaction. If you’re in this situation, it can be helpful to: Recognise when you’re on a hair-trigger. Allow yourselves the space to respond to each other in a slower manner. By being aware and mindful of your tendency to fire from the hip, you can encourage one another to take more time, and even give yourselves a few seconds delay – it could help stop you saying something you regret. Put difficult conversations on hold. At times, it may be worth saying to your partner “I’m not in the right place to have this conversation, can we talk about this later?”, or “I need to not talk about this right now, can we just not?” Stopping a conversation you just can’t manage, in a respectful way, is sometimes the right thing to do. Dealing with difficult issues often comes down to choosing the right moments. Be sensitive to your partner. If tiredness is taking its toll on your partner and you can see they’re over tired and stressed, sometimes it’s not wise to launch a conversation, even if you’ve got an issue that you really want to discuss. Play the long game. The reason these actions are so worthwhile is because your child’s sleeping difficulties may be an ongoing issue. And, as with any ongoing issue, the small things you say and do will rack up over time. So play the long game; if you both make sure that you use kind words, assure each other that there are solutions, remind them that you’ll make it through together as a family, bring them tea, offer them things, and try to show each other that you’re considering them. By staying positive and being loving in small ways, you’d be surprised how much difference this can make over time. Be prepared that you may not be rewarded for this in the short-term – sleep deprivation can cause us to miss the kind deeds that are happening right in front of us – but it will help in the long term. How you can help your child  86% of children with additional needs have issues with sleep, so if you’re experiencing difficulties, you’re not alone. There can be various reasons for this. It is important to seek medical advice to make sure there is not a medical cause for your child’s problem sleeping. There are also many different strategies and approaches to helping children sleep. We recommend that you always consult a GP or relevant health practitioner before attempting to change a child’s sleeping habits. And it may be worth seeking help from a sleep specialist, ideally one that understands sleep disorders in relation to your child’s condition. Regardless of what techniques you are advised on, or whatever techniques you’re currently trying, remember that improvements in a child’s sleep may take some time. Research suggests that after changes are made, improvements in a child’s sleep often occur gradually, and for some parents their child’s sleep problems become more challenging before improvements are reported [2]. If you’re trying new things, (for example, a new bedtime routine, withdrawal of attention during the night), you may also find that there is also an initial resistance from your child. In other words, it can be darkest right before the dawn, and parents may need to endure a short-term worsening of the problem [3]. Whatever your situation, you can read more about techniques, resources and organisations that can help you and your child sleep in Contact's guide for parents, Helping your child sleep available free to parents who contact their freephone helpline on 0808 808 3555, helpline@contact.org.uk References  [1] Tietze et al., 2014 [2] Stuttard et al, 2015  [3] Beresford et al., 2012

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.