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Parenting through Rise-filtered glasses
As a new parent, you might find yourself cut off from some of your usual social outlets, stuck at home for long stretches of time with only the baby for company. At this time, family and friends can be more important than ever, providing support and advice to boost your confidence and help get you through the tougher days. If your friends and family live far away, or if you don’t have face-to-face access, online social media can help you and your partner feel more connected to the outside world. Emotional support and positive feedback from other parents can also be invaluable as you figure things out [1] [2]. Social media can give you access to this, but it also helps you stay in touch with old friends who keep you connected to the parts of your life outside your parenting role [3]. Beating loneliness with online social interaction Your baby is always going to be your first priority, but these other social connections are important. As humans, we need to have meaningful relationships with each other – when we disconnect socially it can affect our health, making us more stressed and more likely to get sick, and affecting our sleep and concentration [3]. Social media can help you feel less isolated but it’s important to pay attention to the way you use it. Parents who actively engage with friends on social media tend to feel less stressed and more positive about their role as parents [2] but people who just spend more time on social media without engaging tend to feel more isolated, not less [3]. The difference here is between use and interaction. We’ve all spent time staring into our phones, refreshing our social media feeds in the hope that something new will come up. But this isn’t going to help you feel more connected when you’re knee-deep in baby wipes waiting for your partner to come home. You’ve got to reach out and engage with people if you want to experience the positive effects of social media. Turning off the filters It’s also important to keep some perspective on what you see through the lens of social media. We all know that Facebook life isn’t real life, and that nobody ever looks as good as they do on Instagram, but it’s easy to fall into the trap of seeing things through Rise-filtered glasses and believing everybody on social media is having a better time than you.  If social media is your only window into your friends’ lives, you might start thinking they are living happier, more connected lives than you [3]. Try to remember that you’re only seeing an edited glimpse of what your friends want the rest of the world to see. When your social networks start making you feel worse instead of better, take a step back and have a think about who you could reach out to for a chat. It’s the social aspect of social networks that’s valuable, so the next time you find yourself mindlessly scrolling through posts, send a message instead – ask for advice, vent your feelings, or just tell someone a funny story about your day. The empathy, advice and humour that you come across online can give you a life-affirming confidence boost and make you feel better about how you’re getting on as a parent [4]. You might even want to start by making a post here on Click.   References [1] Madge C., O’Connor H. (2006). Parenting gone wired: Empowerment of new mothers on the Internet? Social and Cultural Geography, 7, 199–220.[2] Bartholomew, M. K., Schoppe‐Sullivan, S. J., Glassman, M., Kamp Dush, C. M., & Sullivan, J. M. (2012). New parents' Facebook use at the transition to parenthood. Family relations, 61(3), 455-469.[3] Primack, B.A. et al (2017) Social Media Use and Perceived Social Isolation Among Young Adults in the U.S. American Journal of Preventive Medicine, 53(1), 1-8.[4] Fletcher, R., & St. George, J. (2011). Heading into fatherhood—nervously: Support for fathering from online dads. Qualitative Health Research, 21(8), 1101-1114.
Article | social media, parenting
0 6 min read
Being parents to disabled children part 2
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 (e.g. 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’; [B3] 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.
Article | parenting together, disability
0 2 min read
Disabled children and interfering in-laws
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.
Article | grandparents, parenting, disability
0 2 min read
Considering having another child
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.
Article | parenting, disability, children
0 2 min read
Planning a stepfamily
Becoming a step parent can be one of the most challenging and rewarding things a person can do. And when you join a family where one or more of the children is disabled, you may soon find that good planning is one of the key ingredients to making your new family’s life a success. Different sets of values, attitudes and feelings can lead to stress for children and conflict for adults – but these risks can be reduced with proper planning [1].   Because routines can be so important for disabled children, in the beginning, it’s best to try and settle gradually into the existing way of life of your new family, watching and learning how things are done, and offering help where needed. Your partner and their other children (if they have them) will have spent years looking after the disabled child, working out what works best, so may not appreciate you coming in trying to change things, no matter how well meaning you are. Where possible, try to make sure the children are involved in any decisions you make with your partner. Children who feel they have a say in the transition are more likely to accept a new step-parent, rather than seeing them as a threat to their own parent’s attention [2]. It’s good to talk Your role in the first instance should be to learn the ropes, but it’s important to talk openly with your partner about what your involvement will be. Parents who form new relationships tend to be more likely to avoid talking about relationship and family issues than couples entering their first marriage [3], possibly due to past experiences of marriage and parenting [4]. However, while it can be scary to tackle difficult issues, open communication can minimise the risk of conflict, and better prepare you for the unique challenges that your new life as a step-parent is going to bring [1]. Sit down with your partner and talk clearly about any questions you have about your stepchild’s care. In the long run, clear communication will help you get through tough times. Follow your partner’s lead It’s likely that your partner will have a good understanding of their child’s needs, alongside a number of care routines. Even if you have wildly different opinions about how things should be done, it’s best to try and fit into existing routines, at least in the beginning. You may end up providing a lot of care for your new stepchild and, as you get to know each other better, it may become natural to suggest little changes. In the beginning, however, it’s going to be a lot simpler to follow your partner’s lead until you have a strong sense of why things are done the way they are. Planning and prep  When forming a new stepfamily, it’s very important to take things slowly, plan things properly, and keep lines of communication open. Keeping everything out in the open can help prevent arguments later down the line. Talk about how you are going to handle certain situations, and identify any issues that you might encounter so you can be ready to deal with things together. This can help the whole family to adjust slowly and handle the changes more confidently [5]. Be patient Your partner may want to introduce you to the family gradually, and this can help ease the transition for you. Children cope better when they have a chance to get to know their new step-parent slowly [5]. You may find that taking on the caring duties of a disabled child is more stressful and tiring than you’d first thought, and there may be times when you wonder if you’ve taken on more than you can handle. It’s important to be patient with yourself and your step child, and to remember to take some time for yourself to rest and relax, and to be a partner and a lover as well as a step-parent. The better rested you are, the better equipped you’ll be to support your stepchild, so try to take some time for yourself to pursue your own interests, spend time with your partner, your friends, and your other children if you have them. While it may feel like a luxury to look after yourself, you’ll be better able to look after your family when you’re taking good care of yourself. It’s sometimes possible to get outside help to allow you to take respite breaks. Your partner may have information on this already or, if not, you can find information through your child’s social workers or medical care providers.  Being a step-parent is not always going to be easy. Many step-parents talk about having to do a balancing act, where they fulfill the role of a parenting figure, without stepping too far into the domain of the natural parent. Step-parents who try to exert authority before the children have accepted them can often come up against resistance, so you may have to defer certain issues to the children’s primary carer, at least in the beginning [6] [7]. In time, though, you’ll find your patience pays off, as you settle into your new role as a partner, caregiver, and step-parent. For information on how to get a short break please see Contact's information on short breaks.  All family members, including step parents, are welcome to contact the freephone helpline to talk about any questions you may have about caring for your disabled step child, including education, finances, and information about your child’s condition. They also have information for siblings, grandparents, fathers and looking after your relationship. You can call them on 0808 808 3555, or email helpline@contact.org.uk References    [1] Pace, G. T., Shafer, K., Jensen, T. M., & Larson, J. H. (2015). Stepparenting issues and relationship quality: The role of clear communication. Journal of Social Work, 15(1), 24-44. [2] Visher, E. B., Visher, J. S., & Pasley, K. (2003). Remarriage families and stepparenting. Normal family processes: growing diversity and complexity, 3, 153-175. [3] Afifi, T. D., & Schrodt, P. (2003). Uncertainty and the Avoidance of the State of One's Family in Stepfamilies, Postdivorce Single‐Parent Families, and First‐Marriage Families. Human Communication Research, 29(4), 516-532. [4] Sweeper, S., & Halford, K. (2006). Assessing adult adjustment to relationship separation: The Psychological Adjustment to Separation Test (PAST). Journal of Family Psychology, 20(4), 632. [5] Cartwright, C. (2010). Preparing to repartner and live in a stepfamily: An exploratory investigation. Journal of Family Studies, 16(3), 237-250. [6] Hetherington, E. M., & Kelly, J. (2002). Divorce reconsidered: For better or worse. [7] Kinniburgh-White, R., Cartwright, C., & Seymour, F. (2010). Young adults’ narratives of relational development with stepfathers. Journal of Social and Personal Relationships, 27(7), 890-907.
Article | stepfamily, parenting, disability
0 4 min read
Children in hospital
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.  The charity Scope have a template for a communication passport on their website. Look under ‘Free hospital communication resource’ at www.scope.org.uk/support/tips/health/hospital-stays. Mencap also 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 www.contact.org.uk/general-grants 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. The Contact website has details of available days and times. 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
Article | parenting, disability
0 8 min read
Agreeing on parenting styles
If you follow the news, or if you’ve recently picked up one of the many celebrity magazines that thrives on Hollywood breakups, you’ll know about the divorce between Brad Pitt and Angelina Jolie. According to the A lister couple, they made this decision because they couldn’t agree on their parenting styles. Whether or not this is the actual reason is another matter, but it raises an interesting question about the impact that parenting styles can have on couple relationships. Before we explore that, let’s just brush up on parenting styles. What are they? Well, broadly speaking, they’re just choices that you make as a parent for raising your child. And these choices can be wrapped up and categorised as a style. Here are the four most popular style categories [1]. See if you think any of them relate to your own parenting style. You may find that you don’t resonate with a single style, but perhaps fall somewhere inbetween.  1. Authoritarian parenting Authoritarian parenting is a style that is demanding and rigid. The parent puts strict rules in play and expects them to be followed, which echoes a kind of military approach. There’s little room for children to question why the rules are in place. “It is often effective in the short-term but children often rank lower in happiness, social confidence and self-esteem” [1].  2. Authoritative parenting This style is all about rules and guidelines with high levels of parental warmth mixed in. Parents still view themselves as authority figures, but are also responsive, caring and loving. It’s considered the most effective and beneficial style for children. “Authoritative parents are responsive to their children and willing to listen to their questions. They also concentrate more on nurturing than punishment. This style of parenting is generally thought to elicit the best outcomes for children and they are likely to be confident, more autonomous and more socially responsible” [1].  3. Permissive parenting Permissive parents tend to let their children have control most of the time, with little use of routine or boundaries. They don’t tend to view themselves as authority figures. Parents with this style are typically warm and loving and are extremely responsive to their child’s needs. “They tend to be non-traditional and lenient, often taking the role of a friend rather than a parent. This type of parenting has been linked to childhood adjustment difficulties.”[2].  4. Positive parenting This parenting style is authoritative, but it’s about empowering children, fuelling their self-esteem and giving them positive vision for their own future. While there is no agreement as to what constitutes positive parenting [3], positive parenting has been described as “accepting, warm, involved, sensitive, responsive, caring, and empathetic; social-emotional and cognitive growth fostering; and directive” [4]. "So, if me and my partner have different styles, is that a bad thing?"   Not necessarily. As long as you manage your differences by talking them through together and making your decisions together as a couple – your differing parenting styles don’t have to be a bad thing. Of course, this does rely on your communication being very good. If you’re struggling to talk about your relationship issues without falling out, then differing parenting styles could easily become another source of conflict. "So if we have the same parenting style, we’re good?"   Not exactly. You and your partner might share an “authoritative” style, but that doesn’t mean that all of your parenting decisions will align. There are still plenty of parental decisions that you might disagree on, and there are still lots of variations to an authoritative style. For example, you might believe that a child’s bed times needs to be routine-based, and your partner might believe that your child should go to bed when they feel ready to sleep. You both still see yourselves as authority figures, and you’re both adopting a loving approach, but you’re not in agreement here. All that being said, if you’re adopting the same style (in this case authoritative), then in general you will probably find it easier to make compromises and reach decisions together. "What about my child who’s disabled? Doesn’t that change the game for parenting styles?"   Often it does. Sometimes you can’t adopt the approach that you’d like to, perhaps because of different emotional reactions from your child, or because of the way that your child’s behaviour needs to be managed. This means that parents need to be even stronger with their communication, because with all these additional factors being thrown into the mix - it will be even more difficult to reach decisions together. This will require both of you to work hard, but the rewards of solid communication will justify the investment ten times over. This includes being reflective on what has worked and what hasn’t (tip: be critical of your own approach - it can change the dynamic of ‘my way versus your way’). "For disabled children, is one style proven more successful?"   Every disability is different and no two conditions are the same. But in the studies, the research revealed two interesting things.  1. Parents found that the authoritative style was less successful as the children got older. “This may be due to factors related to the children’s disability, the amount of repetition needed, the limited success that may be achieved, and other demands on parental time and energies" [6]. 2. Parents found that “there is an overall beneficial effect of positive parenting upon the functional outcomes of young children with developmental disabilities, regardless of disability type” [5]. In summary, positive parenting scores points across the board, and authoritative parenting scores points in the early days only. But of course, this isn’t by any means a ‘thus says the Lord”, but it’s a worthy discussion point to have with your partner. Talk with your partner about parenting styles, and make it a conscious thing in your relationship. Even by just thinking about one another’s parenting styles, you can get closer to making those decisions together that ultimately will shape your child’s world and your family dynamic.  References [1] Diana Baumrind (1991) [2] Benson, Buehler, & Gerard, (2008) [3] Russell and Russell, (1996) [4] Bornstein, (2003) [5] Dyches et al., (2012). [6] Woolfson and Grant, 2006
Article | parenting styles, disability
0 4 min read
Coping with disability in the early years
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 our 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.
Article | parenting, disability
0 6 min read
ASD/ADHD diagnosis
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 that suffers with 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 like Put Kids First are online, and 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 that have children diagnosed with ADHD.
Article | disability, children
0 4 min read
Relationships and sex education
Talking to your children about sex and relationships can feel scary, especially if you have a disabled child. But while it might be tempting to put it off, it’s best to start sooner rather than later. Most parents want their children to be well-informed on the subject of sex and relationships [1], and parents of disabled children and young people have a special role in providing support and guidance to enable their children to embrace the challenges of adolescence and grow into informed and confident adults.Throughout this article we use terms such as 'talk to’ and 'discuss' Not all children are able to communicate verbally, and you will know best how to explain some of these ideas to your child. Why do we need to talk about sex and relationships?  There is a tendency to think that disabled people, including those with severe disabilities, do not have sexual feelings, sexual needs and sexual capabilities. But they do. As a parent, you may sometimes feel uncomfortable about this. You may worry that your child will be vulnerable to exploitation, abuse or may become pregnant.Many parents worry that teaching children about sex will encourage them to become sexually active at a younger age. However, children who have received sound sex education are likely to become sexually active later than their peers. There is strong evidence to suggest that children have better outcomes around sexual health when there is good communication with their parents about sex and relationships [2].Defining sexuality as wider than just a physical function is particularly important for young disabled people. A person who is not able to use part of his or her body still has an equal right to full sexual expression. Similarly, a disabled young person should have the same access to sex education, sexual health care, and opportunities for socialising and sexual expression as other young people.Accepting that your child has these sexual feelings, and talking about sex, will help them to understand the difference between a loving relationship and abuse. It may also make it easier for your child to discuss difficult and painful feelings with you. Not knowing and understanding bodily changes and developments can be frightening and bewildering for your child.Remember that, even without ‘formal’ sex education, your child will still learn about sex and relationships in the playground, from the television, or online, where they may pick up any number of myths, misunderstandings and misconceptions. Avoiding the issue of sex and sex education will not make your child’s sexual development, feelings or desires go away, but it may cause unnecessary confusion and worry. When should I start talking about sex and relationships with my child? Sex education in schools is changing to keep up with the way young people form relationships, and you can support your child’s learning by talking to them at home. Think back to your own education – were your school lessons helpful? Did your parents talk to you? Or did you have to learn everything the hard way? What would you like to have learned that you didn’t? Starting the conversation before your child goes through puberty can take the embarrassment out of the subject, and open the door for future conversations. Children are more likely to want to talk to you about sex if they are used to talking openly to you – not just about their condition in general, but other things like money, school work, friends, and so on. Showing an interest in what your child does and says will boost their self-esteem. Encourage your children to talk to you about anything that worries them. Even children with severe communication difficulties may be able to indicate to a family member who knows them well that there are things they are worried about or which make them unhappy.  Start talking to your child early so that problems are less likely to arise – certainly before puberty. Talk openly and casually – while you’re doing something else, like washing up or driving the car – as this gives the message that it is not something secretive or to be afraid of. Be open about your own beliefs and attitudes, but be prepared to discuss them and listen to your child’s point of view. Read books and leaflets and watch videos to inform yourself. When talking about sex, take your child’s condition into account and be realistic. For example, it might take longer; it might mean experimenting a little. Reinforce the fact that the most important aspects of a relationship are love, friendship and mutual respect. Listen without judgement. Try asking your child what they think. Answer questions and don’t be afraid to say: ‘I really don’t know – let’s look it up together’. Don’t bombard your child with questions or talk too much. Many children say it is awful to get a formal lecture on sex or have questions fired at them: ‘I asked a question and she immediately came back with, “Are you having sex then?”. Try and hold onto your anxieties. Answer their questions and respect their privacy. Remember that disabled people have relationships with other disabled people and with non-disabled people. Remember that same sex relationships are as common for disabled people as for non-disabled people. As they get older and become more interested in sex, they’ll find it easier to come to you for support as you’ve already shown that you’re available to talk about it. You’ll also feel more confident about answering their questions [3]. “At special school it was terrible. The assumption was that we wouldn’t have and didn’t deserve sexual relationships”.“I received sex education at home and my disability was not really discussed as an issue. My mum once said to me that she thought it might take me longer than most to get a boyfriend but she was sure I would eventually and she was right!”  Understanding relationships and sex education  Relationships are changing. As young people spend more time interacting online [4] [5], they face new challenges around sex and relationships like sexting, cyberbullying, and the ready availability of online pornography. The way relationships education is taught in schools is changing too. The switch from SRE (Sex and Relationships Education) to RSE (Relationships and Sex Education) is not just an arbitrary name change – it reflects the importance of learning about sex within the context of understanding how relationships work and how to stay safe. As well as factual knowledge about sex and sexual health, your child’s education at school may include lessons about: Different types of relationships. How to recognise and understand healthy and unhealthy relationships. Staying safe online. How relationships can affect health and wellbeing [1].  RSE lessons at school can be a good opportunity for you to build on what your child is learning by starting your own conversations at home.  The changing nature of relationships With the rising costs of living and of higher education, young people face greater challenges to becoming financially independent and are living at home later than previous generations [6]. With reduced funding for social and healthcare services, it may be even harder for disabled young people to access independent living and you may find your children live with you well into adulthood. Staying at home for longer can put further pressure on young people when they start forming relationships of their own. They will have less private time to spend together during important stages of their relationships and long-distance relationships may become more likely [6]. Access to social media can ease a lot of this pressure, providing positive outlets for social interaction. Being able to chat online can be invaluable to people who are shy or struggle to get out and interact with others. It may make it easier for disabled young people to talk to friends, express themselves, and be creative [5]. Understanding how young people use the internet can help you to be a guiding light in their online lives. While there are risks and vulnerabilities associated with being online, such as cyberbullying and controlling behaviour, social media is usually a positive force in young people’s relationships, allowing them to stay in touch more often than they might otherwise have been able to [7]. By being aware of the benefits as well as the risks, you can put yourself in a better position to support your child’s use of online social networks which may improve their experiences of relationships [5]. So, start young. Talk about the positives as well as the risks. Answer their questions honestly; accept that, like most adults, they will become interested in sex; and give them the knowledge that will help them make smart decisions about relationships. Further help If this is a difficult topic for you, you might want to look into the Speakeasy programme and the information provided by the sexual health charity FPA, which aims to increase your knowledge and confidence so that you can develop a more open approach to talking about sex and relationships at home. It is designed to be accessible and considers physical disabilities and learning disabilities in the way it is delivered [8].You can also read Contact’s in-depth guide for parents on Growing up, sex and relationships. Written with parents and young disabled people, it has information on developing your child’s self-esteem, talking about sex and relationships, sexual development and puberty, contraception and STIs, protection from abuse and more. They also have a guide for young disabled people. References [1] Changes to the teaching of Sex and Relationship Education and PSHE A call for evidence - Launch date 19 December 2017. Respond by 12 February 2018 (DfE: London) [2] Kirby, D. (2008). Increasing communication between parents and their children about sex. British Medical Journal, 337, a206. [3] Feldman, S.S., and D.A. Rosenthal. (2000). The effect of communication characteristics on family members’ perceptions of parents as sex educators. Journal of Research on Adolescence, 10, 119–50. [4] Ofcom. (2017). Internet use and attitudes: 2017 Metrics Bulletin. Retrieved from https://www.ofcom.org.uk/__data/assets/pdf_file/0018/105507/internet-use-attitudes-bulletin-2017.pdf [5] Frifth, E. (2017). Social media and children’s mental health: a review of the evidence. Education Policy Institute. [6] Coleman, J. (2010), the Nature of Adolesence. Routledge: London.  [7] Stonard, K. E., Bowen, E., Walker, K., & Price, S. A. (2015). ‘They’ll Always Find a Way to Get to You’: Technology Use in Adolescent Romantic Relationships and Its Role in Dating Violence and Abuse. Journal of Interpersonal Violence. https://doi.org/10.1177/0886260515590787 [8] Kesterton, D, and Coleman, L. (2010). Speakeasy: a UK-wide initiative raising parents' confidence and ability to talk about sex and relationships with their children. Sex Education, 10, 437-448.
Article | sex education, children
0 6 min read