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Children in hospital
in Parents with disabled children: handling stress
Article | 8min read

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

Issues
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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
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
Planning a stepfamily
Article | stepfamily, parenting, disability
Agreeing on medical treatment
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.
Article | disability, parenting
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 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.
Article | parenting, disability
Moving house with a disabled child
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.
Article | parenting, disability
Christmas with disabled children
Article | christmas, stress, parenting, disability
Stress and disabled children
Finding out that your child has additional needs can bring about a whole array of emotions. Getting a diagnosis might take some time – according to the Genetic Alliance UK, about 50% of children with a learning disability don't have a definitive diagnosis. Parents may worry or feel guilty that their child has a disability, but it is important to remember that it is rarely anyone’s 'fault'. Whether you have a diagnosis for your child, or are waiting for one, it is likely that dealing with the practicalities of everyday life can seem to bring a lot of new stress into your life. Parents of disabled children often describe a constant battle for services and feeling unable to cope, dealing with professionals and the thoughts and opinions of friends and family. It’s natural for all parents to feel overwhelmed at times, but when you have a disabled child simple things like a trip to the supermarket can be fraught with anxiety, and getting your child out of the house can mean packing extra equipment or planning for bathroom or feeding breaks. While you may not be able to make stress go away completely, it’s worth learning some tips to manage it. This will help stop it spilling over to your relationship with your partner and other children (if you have them). How to manage stress Sharing your worries with your partner can create a sense of solidarity and togetherness, reminding you that you’re not alone and giving you strength to cope with the challenges you face [1]:  Talk to your partner about the things causing stress in your life. Perhaps you’ve had a bad experience where your child has had a very public meltdown. Maybe you’ve felt judged, or had to abandon your shopping for the safety of home. Tell your partner the story, but also talk about the feelings you had going through it. Look for solutions. Maybe it’s worth paying a little extra for online shopping or waiting for the weekend so one of you can stay home with your child while the other shops. If you can’t see a solution, try reframing the issue. Even if you’ve had to abandon a shopping trip, you’ve still made a brave attempt to get out. Learning something the hard way is still learning, and every tough experience makes you a little better at doing what you have to do. Reframing experiences like this can make it easier to cope in general. Find ways to relax together. You can search online, or ask your child’s professional caregivers for local organisations who offer breaks to carers, but even just making a half-hour weekly window to unwind can help you manage the day-to-day stress. Supporting each other helps you maintain your relationship during stressful times, making it easier to reduce stress and cope with negative emotions [2]. Approaching things as a couple, rather than as an individual, increases your capacity to deal with stress [3]. How to help your partner cope with stress If your partner is feeling stressed, you may need to step up and offer support. As an example, let’s take one of the big worries for parents of disabled children – money. Your situation may have changed dramatically since the birth of your child. Perhaps one of you has had to take on extra shifts to make ends meet while the other has stopped working to take on childcare. This can put a big strain on both of you. When your partner hits a bump in the road, it’s easy to become affected yourself or to shut the stress out, but you can help your partner cope by engaging and responding positively [4]:  Make some time and space for your partner to share their feelings. Stop what you’re doing and give your full attention, even if you find it stressful too. Take your partner seriously. Show an interest in what’s going on – while you can help your partner to reframe the situation, it’s important not to downplay the stress itself. Let your partner know you are there to support them, but also that you have faith in their ability to cope. Work with your partner to find a solution. For example, anyone who has attempted to fill in a claim form for Disability Living Allowance will know that it’s a stressful process that pries into some of the most difficult areas of your life. Though you’re probably tired and stressed yourself, helping out with something like this can ease the burden on both of you [1]. Many parents tell us that the best support and advice comes from other parents. There may be a local support group where you and other parent carers can share experiences and support each other. Parents describe meeting other parents of disabled children as a huge relief, finding out they’re not alone. Local support groups are also great way to find out what is happening in your area and get tips from other parents about local services. To find a support group near you, try the Contact helpline on freephone 0808 808 3555 or helpline@contact.org.uk. It can also be helpful to know that you have a right to taking a break from caring for your child. Short breaks allow you to spend time either with your other children or alone, so you can recharge your batteries, catch up on sleep, do vital jobs, and spend time with your partner. Remember, asking for help is not a sign of weakness or being a bad parent. Spending time away from your disabled child can also help foster a sense of independence in your child. This is particularly helpful for them as they grow up. You can find out how to go about getting a much-needed break on the Contact website. We all go through times of relative calm, and changes and challenges. If you feel you’re experiencing overwhelming stress it’s important to reach out to others for support – either a local voluntary organisation you’re in contact with, friends and family or your GP. Take advantage of all the support available. References [1] Bodenmann, G., & Shantinath, S. D. (2004). The Couples Coping Enhancement Training (CCET): A new approach to prevention of marital distress based upon stress and coping. Family relations, 53(5), 477-484. [2] Herzberg, P. Y. (2013). Coping in relationships: The interplay between individual and dyadic coping and their effects on relationship satisfaction. Anxiety, Stress & Coping, 26(2), 136-153. [3] Badr, H., Carmack, C. L., Kashy, D. A., Cristofanilli, M., & Revenson, T. A. (2010). Dyadic coping in metastatic breast cancer. Health Psychology, 29(2), 169. [4] Bodenmann, G. (1997). Dyadic coping-a systematic-transactional view of stress and coping among couples: Theory and empirical findings. European Review of Applied Psychology, 47, 137-140. [5] Crouter, A. C., Perry-Jenkins, M., Huston, T. L., & Crawford, D. W. (1989). The influence of work-induced psychological states on behavior at home. Basic and Applied Social Psychology, 10(3), 273-292. [6] Fergus, K. D. (2011). The rupture and repair of the couple's communal body with prostate cancer. Families, Systems, & Health, 29(2), 95. [7] Lazarus, R. S., & Folkman, S. (1984). Coping and adaptation. The handbook of behavioral medicine, 282-325. [8] Repetti, R. L. (1989). Effects of daily workload on subsequent behavior during marital interaction: The roles of social withdrawal and spouse support. Journal of personality and social psychology, 57(4), 651. [9] Stanton, A. L., Revenson, T. A., & Tennen, H. (2007). Health psychology: psychological adjustment to chronic disease. Annu. Rev. Psychol., 58, 565-592.
Article | stress, parenting, disability
I am a dad and my child has ASD
Article | fathers, disability, parenting
Mindfulness for parents of disabled children
If you’re the parent of a disabled child, you might benefit from practising mindfulness in: Your relationship with your partner. Your role as a parent. But before we get into its usefulness and what the research says about it, let’s first take a look at what mindfulness actually is. Mindfulness is a moment-to-moment awareness of thoughts and feelings. Mindfulness has become a popular way for people to let go of their stress, and to ‘find’ themselves in the midst of their daily (and often very busy) lives. Studies have shown that practising mindfulness helps foster positive feelings like contentment, self-awareness, empathy and self-control. It soothes the parts of the brain that produce stress hormones and builds those areas that lift mood [1]. The practice of mindfulness is usually a guided process, and there are a number of exercises that can be used by everyone; you don’t need to attend a class. But you can also practice mindfulness simply by concentrating on your own breathing. There are lots of mobile apps with guided processes for mindfulness. Apps are a helpful option because they can sit in your pocket for the opportune moment – if you are busy looking after your disabled child, convenience is everything. Even if you only have time for 5-10 minutes it can still be very beneficial. It’s well worth doing a bit of research to find an app that you enjoy using, as the practice of mindfulness becomes more powerful when it becomes a daily habit. If you don’t like the sound of the person’s voice or what they are saying, you’ll be less likely to want to listen to the app! Now, let’s get back to the two ways that it can help you, and what the research actually tells us. 1. Your relationship with your partner We all face stressful, difficult and challenging situations, and our relationships would probably be a lot stronger without them. But it’s far too idealistic to expect stressful moments will completely go away; they are a fact of life in any relationship. Families with disabled children have to cope with significant emotional, social, physical and financial pressures, and everyone has different coping styles. Some people cope by focusing on a problem and finding solutions and strategies to improve the situation. Other people focus on finding ways to feel better about a situation by reinterpreting it, distancing themselves, or even denying or avoiding it. Partners can find these differences frustrating. Mindfulness can help us with our reaction to stressful events. By mentally preparing the mind and the body, we can be less controlled by situations when they occur, and we can handle conflict better. This creates some space for us to be the best versions of ourselves for our partners [2]. Mindfulness is also very much geared towards experiencing the present moment, and having a moment-to-moment awareness of the world around us. By being truly ‘present’ with our partners, this can help us become better listeners and focus on how to improve the problems we face. 2. Your role as a parent From a carried out on mothers with children who have autism (65%) and other disabilities (35%), mindfulness led to “significant improvements” in: Stress. Depression and anxiety. Sleep quality. Life satisfaction [3]. While this particular study carried out by the The American Academy of Pediatrics was aimed at mothers, the nature of the results suggest that fathers would also benefit. There’s more research to be done, but for now, the benefits are encouraging. If you want to try out some mindfulness, search for ‘mindfulness apps’ in your search engine to bring up information about free and paid Apps for iPhone or Android, plus reviews for them. Some focus on topics such as relationships, health or sleep. Try out a few to find the right one for you. Have you tried mindfulness for yourself, with your partner or with your family? Did you find that it made a difference? Or are you a little skeptical? We’d love to hear your thoughts – so please do leave us a comment or get in touch via our Facebook page. References [1] http://franticworld.com/what-can-mindfulness-do-for-you/ [2] Carson, J. W., Carson, K. M., Gil, K. M., & Baucom, D. H. (2004). Mindfulness-based relationship enhancement. Behavior therapy, 35(3), 471-494 http://www.sciencedirect.com/science/article/pii/S0005789404800285 [3] Dykens, E. M., Fisher, M. H., Taylor, J. L., Lambert, W., & Miodrag, N. (2014). Reducing distress in mothers of children with autism and other disabilities: a randomized trial. Pediatrics, 134(2), e454-e463 http://pediatrics.aappublications.org/content/early/2014/07/16/peds.2013-3164
Article | parenting, disability, mindfulness
Disabled children and behaviour issues
What is happening? Having a child with a disability is challenging for all members of a family. And as parents, adapting to a new set of circumstances like this can be difficult – even stressful. This stress may be impacting your relationship with your partner.  Why is this stress affecting our relationship so much? First of all, a decline in relationship quality is quite typical for any parent [1], and this is largely due to the stresses of becoming a parent. A lack of sleep, fatigue and having less quality time together are a few of the most obvious factors of this stress, which in turn make it more difficult to communicate, resolve issues and manage situations. Such stresses are exacerbated for parents that have children with disabilities. They sometimes behave in a way that is hard to control (Learn more about managing behaviours) According to research, stress levels for parents raising a child with autism tend to be higher than other disabilities [2]. This is partly due to the fact that the senses of ASD children are elevated, which sometimes makes behaviour even harder to handle. Another reason that this may be affecting you both is because you’re probably still adjusting to brand new routines, which might not come easy. Of course, adjusting to new routines is a challenge for any parent, but certain disabilities can cause behaviours to be unpredictable which is why adjusting can present even more of a challenge.    How can we help the situation? Remember that couples have gone through similar experiences to what you're going through right now, and they may have valuable tips and advice to offer. Consider checking out Contact's family group support pages and reach out to people who have children with a similar condition. Depending on the age of your child and your circumstances, you may find that you’re already beginning to adjust and form new routines. But even if that’s the case, it can still really helpful to talk to each other about how well you’re coping. You may even find that you can help others. If you’re struggling, don’t harbour it for the sake of staying positive. While a positive outlook is helpful, it’s also necessary to be real and honest. Hold on to the fact that, although raising your baby will be challenging, your roles as parents can still be fun, exciting and very rewarding. If the relationship stays strong and you’re committed to working together, there’s a much greater chance of that becoming a reality.  [3] References [1] Twenge et al., 2003; Mitnick et al., 2009 [2] Bouma & Schweitzer, 1990; Hastings & Johnson, 2001; Silva & Schalock, 2011; Zablotsky, Bradshaw, & Stuart, 2013. [3] Houlston, C., Coleman, L., Milford, L., Platts, N., and Mansfield, P. (2013) Sleep, sex and sacrifice: The transition to parenthood, a testing time for relationships? OnePlusOne: London.
Article | parenting, disability
Financial pressures with a disabled child
What is happening to us? Many parents caring for a disabled child will tell you outright: the costs are greater. If that’s you, you might be finding that these extra financial stresses are causing a strain on your relationship. If, as a couple, you’ve never dealt with financial struggles or argued about money before, this may be new territory for you both. This can be tough to work through with your partner because the impact of financial worry is so consuming. And of course, it has an impact on almost every aspect of daily life, which makes it harder for your relationship to thrive. Why is this happening? Many families endure financial hardships but, financially speaking, is it really more difficult for families with disabled children? The short answer to this is yes. This is mainly due to the fact that many items need to be specialised – the 'bog-standard' versions simply won’t be fit for purpose, and specialised items can cost significantly more. The specifics are obviously dependent on the disability in question, but many parents can expect to face several expenses on: Special dietary requirements Specialised equipment and toys Some items and equipment costs may never have occurred to you as requiring modifications, but for some disabled children, specialised versions of the same item are absolutely essential for their safety and usage.  These are not lifestyle costs, but basic costs for the same living standards. Here’s a quote from a dad that had to shell out a lot of extra cash so that his child could have a similar experience to other kids: “Our current battle is trying to get a bicycle for our young son, a disabled 11-year-old. My older son’s bikes have never cost more than £50 and have generally been second hand. Getting Isaac, our disabled lad, a bike is a very different ball game. The cheapest we have found is £800 because he needs two wheels at the back, a waist cradle and harness to support him, and it needs to be a tag-along bike so my husband can pull him with his bike. So, Isaac can’t have a bike, because we can’t afford it. It just makes me mad that things are so much more expensive when you have a child who has disabilities. He longs for a bike and to be able to join in!” For many parents in similar situations, this is on top of other expenses too, including additional care needs, additional heating, clothing and laundry needs, and travel to appointments [1]. Unfortunately for some parents, financial strains don’t stop there. Parents are often entitled to financial support through the government, but because the word ‘disability’ is a large umbrella term for many circumstances and needs, the process for getting support is not always straightforward. Many parents with disabled children aren’t sure of exactly what they qualify for. This uncertainty will just add to the frustrations felt by many. This extra financial pressure can impact the family as a whole, but also the relationship on parenting couples. But why does financial stress specifically impact the relationship so much? Here's a few of the main reasons: Couples may never have faced the strain before, so they are not experienced with handling disagreements on the subject. The main provider can feel an increased sense of pressure to earn more. Feelings of guilt can fester and this can be quite negative for the relationship. Expectations of 'family life' might be different to what new parents had imagined, which can result in feeling somewhat disenchanted. This feeling can cause some to withdraw from their partners and the people around them. When families are ‘comfortable’ financially, it usually means they have freedom and options. In a relationship or family where you’re limited by finance, it can feel like you’re restricted or trapped. These feelings can really affect your behaviour towards one another. How can we help our relationship thrive through financial stress? 1. By talking to each other As a couple, one of the most useful things you can do is to get some clarity on your wants, needs, hopes and fears. Anticipating potential problems can give you more realistic expectations about the future, and allow you to find a more relaxed way to discuss problems together [1]. Set some ground rules about what you will do next time an argument breaks out. You may want to decide to take a break from the conversation and return to it when you’re both feeling a bit calmer. Try saying something like “Can we talk about this in a different way once we’ve calmed down a bit?” Although this may be a given, try to avoid having these discussions in a supermarket, the bank or other public places where the money pressures are suddenly most apparent. You’ll have a much better chance of getting a positive outcome if your conversations take place privately in your own home. Be honest with yourselves and kind to each other and you’ll significantly improve the chances of talking about money without an argument. 2. By taking practical steps For many couples who are struggling with financial strains, the idea of money planning goes out the window. For some, their focus goes into simply surviving and putting food on the table. But even if money is very tight and there’s little or no chance of saving, money planning can still help you. A budget is still a sensible idea – even if it only helps you realise how much extra help you need. You can find a free planner through Money Advice Service, along with a few really helpful online guides. It may be useful to keep a spending log over a month or two to see what you’re really spending. When you can see the whole picture, you’re in a better position to make decisions about which costs are essential and where you might be able to cut costs. Remember to really consider all of your extra expenses like those in the table above. If you’ve got some friends who’ve been through something similar or adopted a child with a disability, it might be an idea to ask them for guidance. Your midwife or doctor may also be able to offer recommendations. Use the people around you and don’t be afraid of reaching out. 3. By seeking out entitlements Benefits and financial support can be a tricky field to navigate as they are liable to change over time, and as we’ve already mentioned, it will depend on your family circumstances and your child’s disability. For more advice on benefits, tax credits and other sources of financial help, visit Contact's help page. Also, check out the current situation through services such as the Citizens Advice and the Money Advice Service, who will be able to talk through your budget and help you learn what you might be entitled to. While financial pressure can be quite heavy, the relationship and family can still grow and develop. If money were no object, of course building up your relationship and family would be easier, but the most important thing is to function as a unit, and face the challenges together. Reference [1] 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). [2] Contact (2014), Counting the Costs.
Article | parenting, disability, finance
Relationship problems with a disabled child
What is going on? Every couple will face challenges in their relationship long before a baby comes onto the scene. Whether it’s trust issues, repetitive household arguments, in-law grievances, or one feeling unvalued by the other, all couples fall out about something from time to time. When a baby arrives, these relationship issues and challenges do not disappear. On the contrary, they sometimes become harder to deal with.  Why might this be happening? Whether you’re the mum or the dad, the transition to parenthood is a time of increased stress for many, if not most, parents [1] – this has been affirmed by decades of research. The stress of parenthood can be exacerbated and intensified if your child has a disability, or if their additional needs require more of your time, patience and attention. It's not easy to compartmentalise stress in one aspect of your life, and it's likely that this stress will spill over into other areas, including your relationship. On a very practical note, a lack of sleep – a state almost guaranteed for a new parent – is enough to disrupt the equilibrium of life and increase stress all by itself. “Despite some parents describing their ability to normalize constant sleep interruptions, the sleep deprivation experienced by parents of children with complex needs is both relentless and draining.” (McCann et al) How can I improve things? If you and your partner know and anticipate the kind of difficulties you will face, you are more likely to have realistic expectations and be able to deal with difficult situations when they come up [3]. For this reason it’s really important for parents-to-be to work on talking openly and positively about their fears and expectations of their child’s disability or additional needs – even if it feels like you’re weighing too much on the negatives [4]. If you know what your biggest worries are as a couple, you can work together to support one another. While you are both adjusting to your new roles and circumstances, it’s also important to take care not to lose sight of your individuality. Perhaps it’s worth drawing on family and friends to help you take some time for yourselves to visit your hobbies or just listen to silence. It’s not selfish to do that, and it’s likely that your support networks will understand the importance of you having downtime. Equally, spending quality time with your partner is an important reminder that you are still a couple as well as parents. References [1] Shapiro, A. F. & Gottman, J. M. Effects on Marriage of a Psycho-Communicative-Educational Intervention With Couples Undergoing the Transition to Parenthood, Evaluation at 1-Year Post Intervention. J. Fam. Commun.5, 1–24 (2005). [2] McCann, Damhnat, Rosalind Bull, and Tania Winzenberg. (2015) Sleep Deprivation in Parents Caring for Children With Complex Needs at Home A Mixed Methods Systematic Review. Journal of Family Nursing 21(1), 86–118. [3] 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). [4] Stamp, G. H. The appropriation of the parental role through communication during the transition to parenthood. Commun. Monogr.61, 89–112 (1994).
Article | disability, parenting
Tiredness and disabled children
What is happening? When couples become parents, they wave goodbye to their seven-hour sleep cycles, and accept that it’s a normal part of early parenting. When you have a baby with additional needs, sometimes it means being even more sleep deprived. Babies with complex needs might struggle more with feeding and resting, or they may require extra diligence from their parents throughout the night. Couples undergoing sleep deprivation might find it harder to talk to each other, and find that their relationship struggles under these conditions [1].  Why is a lack of sleep affecting us so much? Sleep deprivation is not to be underestimated. Just getting through the day can be tough and your communication with your partner can really suffer [1], even with generous pots of coffee on the go. For some parents it can be a draining and relentless experience. In one study, the majority of the parents who had a child with additional needs reported feeling: Tired during the day (87%). Tired when they woke up (77%). Too tired to do the things they like to do (63%). Too tired to finish household tasks (73%). [1] If you’re finding it difficult to function as a parent, a partner and a person, you’re not alone. What’s more, studies have shown us that couples in their first year of parenthood generally see a 40-67% drop in relationship quality. So, even without the extra challenges, parenthood tends to put a significant strain on the relationship. How do we help with this? When you’re both busy and exhausted, you may feel that you’re not fulfilling one another’s needs or demonstrating your love to each other. If that is the case, it can be tempting to put your relationship on hold until life gets less hectic, especially if you’re an ‘all or nothing’ kind of person. But, in times like this, it might be an idea to focus on small gestures like a note on the fridge, sending a text, or running a bath for when your partner gets home. Placing value on these small things can sometimes have a stabilising effect that helps you through the tougher time periods. Because tiredness and fatigue limits what you can fit into your day, you might have to change or reset your expectations of one another. For example, if you both agreed to a household chore routine before the baby came, there’s a good chance you now won’t be able to maintain the level of cleaning that you did before. Or during your conversations together, maybe there was an expectation on one another for undivided listening and attention. It’s worth talking with your partner about what expectations you have of one another, and which of those expectations you would both like to change. You might think that your expectations would automatically adjust, but sometimes it’s hard to let go of habits and routines. Research has shown that if your expectations are more realistic, you are better able to deal with difficult situations when they come up [3]. References  [1] UK – Questionnaire of 2,312 parent carers (incl. mothers, fathers & grandparents) of child with disability. Hock, Robert M., Tina M. Timm, and Julie L. Ramisch. (2012) Parenting Children with Autism Spectrum Disorders: A Crucible for Couple Relationships. Child & Family Social Work, 17(4), 406–15. [2] Caicedo, Carmen. (2014) Families With Special Needs Children: Family Health, Functioning, and Care Burden. Journal of the American Psychiatric Nurses Association 20(6), 398–407. [3] 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).
Article | disability, parenting
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