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Disabled children and bullying
Article

Children with a disability are more likely to experience bullying than other children, so it can be a particularly worrying issue for parents [1] [2].

If your child is being bullied, there are steps you can take to stop it and to help them protect themselves. Depending on your child’s needs and the situation they find themselves in, this may involve working with the school, encouraging social support, or educating them about the risks. [3].

What is bullying?


The Anti-Bullying Alliance defines bullying as:

The repetitive, intentional hurting of one person by another, or by a group, where the relationship involves an imbalance of power. Bullying can be carried out physically, verbally, emotionally or through cyberspace.

Bullying is often aimed at people who are different, for example because of race, religion, disability or sexuality. Bullying can be:

  • Verbal. Name calling, insulting, teasing.
  • Physical. Pushing, shoving, hitting, damage to personal property.
  • Indirect: Spreading rumours, excluding from friendship groups.
  • Cyberbullying: Sending nasty texts, emails, or social media messages, sharing photos online.

Preventing cyberbullying


All types of bullying are horrible for children and can leave parents feeling helpless and angry. Cyberbullying is often harder to avoid as bullies may hide their identities and can strike from anywhere, even when your child is relatively safe at home. This form of bullying that can happen 24 hours a day, seven days a week [4].

Children with intellectual and developmental disabilities, or those with active social media profiles may be at greater risk of cyberbullying [5] [6], but you can reduce the likelihood of your child being bullied by staying involved in their online experience.

First, make sure you find out how to add parental restrictions to all websites that your child has access to – and keep this under review. The NSPCC has a website aimed at helping parents keep their children safe online at https://www.net-aware.org.uk/

The most effective thing you can do is to talk to your child about the risks of cyberbullying and help them anticipate situations where they might be at risk. Having active discussions about the risks and making sure they understand how to keep themselves safe is more effective than just placing limits or controls on your child’s internet use [6].

  • Make sure your child is aware of advice on respecting others and staying safe on the internet, including when it is safe and unsafe to share information online.
  • Ask them to let you know if someone or something is worrying them, or making them feel uncomfortable.
  • Make sure your child knows not to respond or return any bullying messages.

If your child is being bullied online, keep copies of emails, texts and social media posts. Make a note of the dates and times, along with any information about the sender’s internet details if you can. This may help to identify the bullies.

Preventing other types of bullying


One thing to be aware of is that your child may not necessarily come to you for support if they are being bullied. Many children want to avoid burdening or worrying their parents and so may not bring it up at home [2].

Our partners at Contact asked parents how they realised their child was being bullied. They came up with a number of signs to look for:

  • Becoming withdrawn, if previously outgoing.
  • Coming home with cuts and bruises.
  • Regularly coming home with torn or missing clothing.
  • Refusing to go to school or a youth club.
  • Doing less well at their schoolwork.
  • Changes in mood – becoming depressed, angry, anxious.
  • Changes in behaviour, for example wetting the bed if they have been dry at night.
  • Being aggressive at home with their siblings and other family members.
  • Sleep problems, nightmares, or waking at unusual times.
  • Getting more headaches, stomach aches and other minor illnesses.
  • Immersing themselves more into obsession and fantasy.
  • Self-harming, cutting, hair pulling, skin picking.
  • Wanting to change their journey or time of their journey to school.

Changes in your child’s behaviour are not necessarily related to bullying, so it’s always important to find out more.

In preventing bullying, your child’s friends can be one of the best sources of support. Talk to your child about strategies for forming and maintaining friendships, as this can help them protect against bullying:

  • Encourage them to get involved in social activities.
  • Create opportunities for them to mix with other children.
  • Talk to other children and parents about your child’s disability so that they know how to be good friends.
  • Remind your child of what they have to offer in social situations [7].
  • Ask the school to help. There is more information below on Circles of Support.

Strategies to help deal with bullying


Disabled children have different needs and may experience bullying in different ways. There is no ‘one size fits all’ approach. Some children, due to the nature of their disability, might not be able to understand the process or the ideas behind some ways to help deal with bullying. But there are ways to help support your child – for example by developing their confidence. Parents we talked to also described different forms of support that the school had put in place to help their child. Suggestions parents made include:

  • Teach your child some simple sentences about their condition. Encourage them to practice until they can explain their condition confidently. Check also that they are happy with the explanation that you give to other people about their condition.
  • Create opportunities to talk to your child about name calling and teasing. Ask how things are going at school, who they like playing with or who they try to avoid.
  • Some families find roleplay useful. Work with your child through difficult or worrying situations, and decide on appropriate comments and reactions. The more your child is involved in deciding on the best responses, the more likely they are to use them.
  • Draw pictures of the bullying and ways your child could deal with it. You could draw a cartoon strip which shows your child walking away from the bullying or telling someone.
  • Use ‘social stories’ to help your child understand and deal with bullying. Social stories describe a situation and focus on a few key points, such as what will happen and how people might react. This can increase your child’s understanding and make them more comfortable in different situations. You can use social stories to explain times and places where bullying might happen, like lunchtimes or on school transport.
  • Give your child the opportunity to tell you how they feel. Agree on a time or place to do this, if you can.
  • Draw a map of the school and ask your child to colour in different areas to show how safe they feel. For example, safe areas might be green, unsafe areas might be red, and orange could represent areas where they’re not so sure.
  • Give them lots of praise when they cope with a difficult situation.

Dealing with the school


As well as the bullying itself, you may feel frustrated by a lack of communication from the school, or a sense that nothing is being done about punishing the perpetrators. Schools have a duty of care towards their pupils, which means that they must look after the safety and wellbeing of their pupils as a reasonable parent would. They can take steps to deal with behaviour, even if it isn’t taking place on the school premises. If you think your child is being bullied at school:

  • Tell the headteacher. Try to arrange to have an appointment rather than a quick word in the playground.
  • Be specific about what is being said and the effect it is having on your child. The school may not be aware that it is happening, or the impact it has on your child’s self-esteem.
  • Ask for a copy of the school’s anti-bullying policy and behaviour policy.
  • Keep a record of all the incidents.
  • If there are any physical injuries, take photos to show the school.
  • If your child is unable to attend school because of the stress of the bullying, get this confirmed by your GP and tell the Education Welfare Officer about the situation.
  • Ask for the bullying to be recorded in your child’s individual education plan; statement; Education, Health and Care plan; or co-ordinated support plan (Scotland) if they have one.
  • Work with the school to resolve the issue. It may not happen immediately, but do keep meeting and working with them.
  • Get advice about disability discrimination and the disability equality duty.

Remember that the teachers may not know the situation as well as you do, and might interpret the behaviour differently. They might just think that other children are innocently questioning your child about their condition but, if it upsets your child, then it is not acceptable and needs to be stopped. If the bullying continues, you may want to make a complaint.

What the school can do


Schools use a variety of methods to deal with bullying, some of which are listed below. Ask your child’s school for their behaviour and discipline policy to see what they do.

  • Circle of friends. This was developed to promote the inclusion of students with disabilities and difficulties into mainstream schools. It’s a programme involving pupils, teachers and parents.
  • Telling schools. If the child being bullied is unable to or too scared to tell a teacher, all other children know it is their duty to report it.
  • Peer support programmes. Older pupils can volunteer to be trained in caring for younger pupils. These volunteer pupils are identified by a badge or ribbon and everyone in the school knows bullying is not acceptable.
  • ‘No blame’ support groups. Bullies are not blamed and are encouraged to work in a group together with a teacher to suggest a solution.
  • Whole school individual approach. This uses mentoring in addition to circle time, restorative justice and quiet clubs.
  • Group and individual sessions based on listening and behavioural therapy. The sessions explore anger management, social skills and resilience, emotional issues, and relaxation.
  • Training and resources that encourage staff and children to think of ways to make their school more inclusive, helping them to challenge bullying in their school.
  • Projects that provide opportunities for disabled and non-disabled children to spend time together, looking to bust the myths and change views and attitudes.

Your experiences as parents


While your main focus may be on your child’s experience, it’s also important to recognise the impact that it’s having on you as parents and as a couple.

Parents often feel a range of emotions after finding out their child is being bullied – anger, guilt and anxiety. It is natural to have these feelings but there are things you can do to help cope:

  • Share how you are feeling with family and friends. Consider peer support through online forums and social media.
  • If there is a support group for your child’s condition, get in touch. They will probably be supporting other parents with similar experiences.
  • Remember you’re not alone, and that the bullying can be resolved.
  • Reassure yourself that you’re doing a good job.
  • Contact your local parent carer forum for support from other parents in your area.
  • Get support from anti-bullying organisations.
  • Spend time together as a family.

When your child is being bullied, it can be easy for you and your partner to feel guilty and start blaming yourselves, so it’s important to remind each other that you are both doing everything you can. As well as offering each other support, it can be useful to try and understand the causes of your feelings – for example, a lack of support or a sense of powerlessness may add to whatever stress you’re already feeling about the actual bullying [8].

If you are trying to engage the school, share the burden of contact and perseverance and make sure you are both doing your bit in starting conversations and chasing up replies. This can make things much easier than just leaving one parent to deal with everything [8].

For more information about spotting the signs of bullying, strategies to deal with bullying, and tips for building your child’s confidence and self-esteem, see Contact’s guide to dealing with bullying.

References


[1] Jones, L., et al. (2012). Prevalence and risk of violence against children with disabilities: a systematic review and meta-analysis of observational studies. Lancet, 380, 899-907.

[2] Bourke, S. & Burgman, I. (2010). Coping with bullying in Australian schools: how children with disabilities experience support from friends, parents and teachers. Disability and Society, 25(3), https://doi-org.uos.idm.oclc.org/10.1080/09687591003701264

[3] Turner, H.A., Vanderminden, J., Finkelhor, D., Hamby, S. and Shattuck, A. (2011). Disability and Victimization in a National Sample of Children and Youth. Child Maltreatment. DOI: 10.1177/1077559511427178.

[4] Smith, P.K., Mahdavi, J., Carvalho, M., Fisher, S., Russell, S., & Tippett, N. (2008). Cyberbullying: it’s nature and impact in secondary school pupils. The Journal of Child Psychology and Psychiatry, 49(4), 376-385.

[5] Didden, R., et al., (2009). Cyberbullying among students with intellectual and developmental disability in special education settings. Dev Neurorehabil. Jun;12(3):146-51. doi: 10.1080/17518420902971356.

[6] Mesch, G. S. (2009). Parental mediation, online activities, and cyberbullying. Cyberpsychology and Behaviour, 12(4), 387-393.

[7] Rose, C., Monda-Amaya, L. E., Espelage, D. L. (2010). Bullying perpetration and victimizationin Special Education: A review of the literature. Remedial and Special Education, 32(2), 114-130.

[8] Hale, R.C., Fox, C., Murray, M. (2017). “As a Parent You Become a Tiger": Parents Talking about Bullying at School. Journal of Child and Family Studies; 26(7), 2000-2015, DOI:10.1007/s10826-017-0710-z.

Issues
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Disabled children and sex education
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. 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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. 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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.
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Moving on As you begin to develop a picture of your usual response to stress, you may notice patterns and links. Sometimes, just being aware of these is enough to start shifting them, but you may find it also helps to vary your routine and try to vary your responses. Start with small changes and notice what happens as you mix things up. Does replacing your second cup of coffee with a green tea make the morning feel less manic? Does stopping to breathe in the middle of hanging out the washing make it feel less like it’s taking the whole afternoon? Little things can make a big difference. One of the most powerful steps you can take is to reach out to others and ask for help. This can include social support from your partner or other people close to you, and support from professionals like therapists and counsellors [3]. If you feel you could benefit from some extra help, even if only for a little while, it’s important to seek help. 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If you have a child with challenging behaviour, you are not alone. There are many reasons disabled children exhibit challenging behaviour, and there are often complex reasons behind a child’s behaviour. In many ways, parents of disabled children lead similar lives to parents of non-disabled children, but the differences can be a source of increased mental distress and exhaustion for parents [1] [2]. When our children have behaviours that challenge us, we have to learn to think outside the box in ways most parents don’t have to contemplate. You may feel under a lot of pressure. The feeling of being to blame, worry about not parenting well, and the feat that others think you are a bad parent are all too common. Parents can feel very alone and it can be a relief to discover that other parents are facing the same issues. If your child has behavioural issues, you are probably investing a lot of energy trying to keep things under control. This requires great organisation skills, and you may be left feeling that you don’t have the time to get everything done [3] [4]. This lack of time and energy can get in the way of your relationship with your partner, [5] [6], so it’s important to make sure you have adequate support in place to help you manage your child’s behavioural issues – not just for your child, but for your whole family. Talk to your partner Talk to your partner about what you’re going through, and the support you’d like to have. If one of you works and the other takes on the main caring duties, you may each feel that the other doesn’t understand what you’re dealing with every day. You may be able to give each other a few new ideas about how to ease the pressure. Or, it may help just to be able to talk about your day. Keep a journal While your child’s behavioural issues might be a result of their condition, there could be social factors at play too [7]. Try keeping a journal of your child’s behaviour and the social situations that surround it. Are there certain times of day, or certain groups of people that make things better or worse? Look for the links between your child’s social interactions and their behaviour so you can identify risk factors and make plans.  Beef up your parenting skills Studies have shown that working on your parenting skills can make things easier for you [7]. Some parenting courses are free but you may have to pay a fee, depending on the provider. Search online for courses in your area, or contact your local Children’s Centre or council to ask what’s available.  Get help from other family members Parents who have support from their extended families tend to cope better [8]. One of the toughest things for parents of children with behavioural issues is the sense of social isolation – speak to friends and family members and let them know that you would benefit from their support. Spend time with other parents One of the greatest sources of support for parents of children with behavioural issues is other parents in similar situations. Seek out other parents in your community, perhaps through your child’s support networks or school. This might feel like something you don’t have time for, but it could deliver its own reward, as community support helps break down your sense of isolation [7]. Being among other parents can also help you decompress by talking about your experiences, and learning from others’ successes [8].  Talk to your child’s school If your child is of school age, speak to their teacher or SENCO. The school is a big part of your child’s support network, so the staff should be aware of any behavioural issues. Ask them to work collaboratively with you and to keep an eye on things while you can’t. Parents tend to cope better when they have positive experiences with schools [8], so this is an important relationship to maintain.  It might take a while to build up a support network, so go one step at a time, and be easy on yourself. Lean on those closest to you for support first, and then branch out slowly. As things ease up, and your child’s support network grows, you and your partner will start to feel more in control. You may even find a few moments to dedicate to yourselves and each other. Contact a Family has a free guide for parents available from our helpline on 0808 808 3555 or free to download. Understanding your child's behaviour looks at: Why children behave in different ways. How to set the scene for good behaviour, recognising triggers and finding strategies. Managing specific issues, like tantrums or biting. Looking after yourself - people and organisations who can support you and your family. Puberty and the teenage years, plus much more. References [1] Parish, S. L., Rose, R. A., Grinstein-Weiss, M., Richman, E. L., & Andrews, M. E. (2008). Material hardship among U.S. families raising children with disabilities. Exceptional Children, 75, 72–91. [2] Plant, K. M., & Sanders, M. R. (2007). Predictors of care-giver stress in families of preschool aged children with developmental disabilities. Journal of Intellectual Disability Research, 51, 109 –124. [3] Worcester, J. A., Nesman, T. M., Raffaele Mendez, L., M., & Keller, H. R. (2008). Giving voice to parents of young children with challenging behavior. Exceptional Children, 74, 509–525. [4] Resch, J. A., Mireles, G., Benz, M. R., Grenwelge, C., Peterson, & R., Zhang, D. (2010). Giving Parents a Voice: A Qualitative Study of the Challenges Experienced by Parents of Children With Disabilities.  Rehabilitation Psychology, Vol.55(2), 139-150. [5] Brannen, M. A., & Heflinger, C. A. (2006). Caregiver, child, family, and service system contributors to caregiver strain in two mental health service systems. The Journal of Behavioral Health Services and Research, 33, 408 – 422. [6] Seltzer, M. M., & Heller, T. (1997). Families and caregiving across the life course: Research advances on the influence of context. Family Relations, 46, 395– 405. [7] Sanders, M. (1999). Triple P-Positive Parenting Program: Towards an Empirically Validated Multilevel Parenting and Family Support Strategy for the Prevention of Behavior and Emotional Problems in Children. Clinical Child and Family Psychology Review, Vol.2(2), 71-9. [8] Ludlow, A., Skelly, C., Rohleder, P. (2012). Challenges faced by parents of children diagnosed with autism spectrum disorder. Journal of Health Psychology, Vol.17(5), pp.702-71.
Article | parenting, disability
“I want my good relationship back”
I have been in a relationship for 16 years and I have made mistakes galore. A few years ago I became disabled in a way I made a lot of mistake in our relationship prior to the accident. 2 years later we don't sleep together we really don't talk unless argue I really want to work it out we have children I know we both love one another what do I have to do to make this right and I just don't know how because of mistake in our relationship prior. she tells me to leave but I'll ask about it when not mad or upset she seems to want me to stay. she tells me I have fix this but we can't go out because my injury and I try to send messages and it works sometimes but when she comes home she goes to room and close door until I bring her dinner plate someone please help me
User article | communication, arguments, disability
“Make your garden autism friendly”
These have been challenging times, to say the least, for countless parents. Going through lockdowns, then things reopening at a limited capacity, then talks of more lockdowns in some areas — such drastic changes in routine and the uncertainty of what life will be like next week, month, or year can take its toll. And when you have a child on the autism spectrum, you have additional challenges to consider.But, in whatever safe ways are available, your child needs to spend quality time outdoors. And, if you have a garden, it can be the perfect space for your child to enjoy outdoor activities. Along with understanding the benefits of your child being outside, you may have to make a few changes so that your garden accommodates your child's specific needs. Benefits of outdoor play There are many benefits to engaging in outdoor activities for children. Being outdoors can do wonders for improving your child’s attention span. Vitamin D is essential for the health of your child’s bones, muscles, nerves, and immune system, and sunlight is the best source for it. Along with providing exercise, outdoor play can help with the development of your child’s fine and gross motor skills. And there are also plenty of potential mental, social, and emotional benefits to playing outside Activities to consider Here are a few ideas for outdoor activities that can benefit children on the autism spectrum: Play 'sink or float' with items in the garden (e.g., leaves, rocks, flowers) for a good sensory activity. Put together a scavenger hunt for your child to engage multiple senses. Design a garden that will also provide your child with a great overall sensory play. Arrange a back garden camping night for the whole family to enjoy. Increasing safety and accessibility Of course, it’s critical to ensure that your garden is safe and accessible for your child. If you haven’t already, put in a fence or similar barrier to keep your child from wandering off. Make sure your garden is clear of toxic plants, standing water, pet waste, fertiliser, and other hazards. Add a safe place where your child can escape over-stimulation, such as a tube in which they can comfortably fit. If you are lucky enough to have a pool, make sure your child learns how to swim, and install a pool alarm. Now more than ever, children need to be outside. Consider the benefits of spending time outside, as well as the ideas listed here for transforming your backyard into an autism-friendly space. Not only will it help your child stay engaged in fun, educational activities, but it can also provide the whole family with ways to spend quality time together.
User article | disability, parenting, lockdown
“Concerned stepmother”
My husband has decided to uproot his two severely autistic teenage boys from their school so that he can attend university in a city nearly 300 miles away only to try and return them to the school they left in a year's time as the research part of his degree will be conducted in the city he currently lives in. He has been also been offered a university place at a Russell Group university on his doorstep to do exactly the same degree but has chosen the one 300 miles away because it’s more prestigious. My concern is I feel that it is unfair on the children to uproot them especially as they have severe autism and familiarity and routine is important for them. To move a child without Autism from what they know and is familiar to them is bad enough yet alone children with Autism. One of the children in particular does not manage change well and he becomes violent if distressed. I want to support my husband in his studies but feel that he should choose the option that causes the least disruption especially for the children. He thinks that I’m being unsupportive if I don’t agree with his decision and makes reference to his female friends as being supportive almost as if you have a dig. I feel that he is being selfish in his decision but then I question whether I’m being selfish for not supporting him in his decision. We are in a long distance marriage of 100 miles between us which means that I will be left to do all the travelling if he moves city as the support network which was around the children at home, freeing my husband to occasionally visit me, will no longer be there. Tbh, my concern around his decision centres more around the children as I can adjust easier than his children. I am not looking for responses to make me feel better I am looking for objective responses please. How would do approach this situation and what advice if any should I be giving my husband? Thank you for your time,A concerned stepmother
User article | parenting, long distance, disability
Disabled children: balancing childcare
Article | childcare, disability
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 (eg ASD, cerebral palsy), approximately two out of three parents in this study agreed that, overall, having a disabled child has been positive for their family.” We drew from a study of 175 parents and started looking at what they meant by ‘positive’. Here’s what else parents had to say: “I’ve become a stronger and more compassionate person”  When care and attention is highly demanding, sometimes people find out what they’re really made of, and what their relationship is made of too. Demanding times often reveal the point where your resolve begins to wear thin, or where you start to buckle. As a parent in this situation, the love for your child and your commitment to caring for them could strengthen that resolve in a way that surpasses your own expectations. Just as athletes can tap into a hidden pool of strength in the final lap of a 10,000-metre run, parents also find energy, patience and, endurance they didn’t know they had. As a parent, you face the added mental challenge of knowing you cannot quit or duck out but, much like that athlete, it’s your team of family, friends, and support networks that enables you to keep going.  "As a result of having a child with a disability, our family unit has emerged stronger" This extra energy to keep going can show parents how much they’re willing to give of themselves, which may surprise them. Especially those that perhaps considered themselves to be less caring or compassionate in nature.  “I’ve been able to laugh more, and I’m less bothered by trivial things” Parents facing additional challenges can sometimes gain a focus and a perspective that others do not seem to share. And that perspective – what matters and what doesn’t – can become something that sets those parents free from the humdrum of daily life. This perspective isn’t easily taught either. As people who get bent out of shape over trivial things will tell you, to them they’re not trivial issues – they’re deadly serious ones. Perspective is also coupled with resilience. Having bounced back from a series of challenges, you’re more likely to know what is worth your energy and what isn’t. Without realising it, you’ve probably become very good at estimating the value of your energy, your effort and your time. This might explain why parents with disabled children can sometimes enjoy life more, and laugh at the silly things, rather than be upset by them. Now that you’ve seen what other parents have to say about their experiences and how it’s shaped them, we’d love to hear your story. Have you, your relationship, or your family been changed for the better through your experience? Either leave us a comment, or get in touch with Contact. References [1] David McConnell, Amber Savage, Dick Sobsey & Bruce Uditsky (2015) Benefit-finding or finding benefits? The positive impact of having a disabled child, Disability & Society, 30(1), pp.29-45.
Article | parenting together, disability
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
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
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. 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
Article | 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
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