Parents with disabled children: changing expectations

If you have any children with disabilities, you are likely to face some unique challenges in your relationship with your partner.

Those challenges will include addressing your own expectations, and adapting together for the future.

Children with behavioural issues
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
6 min read
Being parents to disabled children: part 1
There’s a common cultural assumption that having a disabled child is a negative thing [1]. This is perhaps most noticeable when the child is born and friends and family offer sympathy rather than celebrate your parenthood. This usually comes from a good place, of course - people’s first thoughts might be about how you’ll cope with the challenges coming your way. These expected challenges will vary from parent to parent depending on the individual needs of the child. Here are some common hardships that parents face: Intensive or unpredictable childcare demands. Difficulty getting the right support. Changes to working arrangements (which can link to financial strains). [1] But, despite all of these challenges and negative assumptions, two out of three parents say having a disabled child has been positive for their family, according to a 2015 study by the University of Alberta, Canada [1]. So what are the upsides? What do these parents mean by ‘positive’? Here are some common responses: “Personal growth and stronger relationships between family members” [1] It’s sometimes difficult to know how far people are willing to go to help you, especially when it comes at a personal cost to them. It’s times like this when you can really find out what your family are made of, and what they’re capable of in terms of support. Some family members can surprise you! Having more help can also mean that you build better relationships with wider family members. Unlike the way families live in other parts of Europe, where wider families share more of everyday life together, in the UK we typically have what’s known as ‘nuclear’ families. That means we keep our ‘immediate’ family very close and the extended family at a distance, meeting up with them only at special events like weddings, birthdays and Christmas time. If your wider family break the nuclear pattern, you might find you have access to a wider pool of support. Another thing about being British is that some of us might not be so good at accepting help; we often reject offers out of politeness or worry that we’re putting people out. By accepting help though, the relationship has a chance to develop in a way that it otherwise might not. Family members might even relish the opportunity to care for you in a practical way that they know you’ll appreciate. Of course, this isn’t limited to family in the blood relative sense. This extends to friends that become very much part of your family network and community. For your child, broadening your community like this can really help them as they grow. “Changes in perspective (e.g. understanding what is important in life and making the most of each day)” [1] Some parents in the study described their perspective as ‘simplified’ (which is a goal that many self-help books are trying to accomplish), and were empowered with a stronger sense of priority. This could be down to the higher demands of attention and focus, which can cause all the fluff and minutiae of life to fade into the background. This fresh perspective is especially helpful for an “always connected” society of people whose attention is often pulled in a million different directions. If you’re experiencing this perspective shift, you might find that it extends to your relationship, giving you and your partner a new realisation of your strength as a couple.   References   [1] David McConnell, Amber Savage, Dick Sobsey & Bruce Uditsky (2015) Benefit-finding or finding benefits? The positive impact of having a disabled child, Disability & Society, 30(1), pp.29-45.
Article | parenting together, disability, family
3 min read
If your child isn't sleeping well
A child who does not sleep well can affect the whole family. Parents can be left exhausted, unable to think clearly and struggling to cope with their daily activities. The child can be left feeling over tired or over-active, both signs of lack of sleep. Brothers and sisters are also affected, feeling tired at school, and sometimes resentful towards the sibling disturbing their sleep. If this continues over a long period of time, it can have an adverse effect on the health and wellbeing of all members of the family. For you and your partner, sleep may become a kind of currency for your day-to-day living, that you need to make everything else in your life work and click together. Without sleep, it’s harder to manage our emotions, to be logical, to complete daily tasks, and to be loving to each other. There’s not much energy leftover for you as a couple. How you can help your relationship: Whatever the cause of your child’s sleep difficulties, it’s wouldn’t be normal if you didn’t feel stressed and irritable when you’ve both been losing sleep [1]. Sleep deprivation can also make you worse at managing your own emotions. This is partly due to being more easily irritated - you’re more likely to quick-fire an emotion before you’ve allowed yourself the space to think through your reaction. If you’re in this situation, it can be helpful to: Recognize when you’re on a hair-trigger. Allow yourselves the space to respond to each other in a slower manner. By being aware and mindful of your tendency to fire from the hip, you can encourage one another to take more time, and even give yourselves a few seconds delay – it could help stop you saying something you regret. Put difficult conversations on hold. At times, it may be worth saying to your partner “I’m not in the right place to have this conversation, can we talk about this later?”, or “I need to not talk about this right now, can we just not?” Stopping a conversation you just can’t manage, in a respectful way, is sometimes the right thing to do. Dealing with difficult issues often comes down to choosing the right moments. Be sensitive to your partner. If tiredness is taking its toll on your partner and you can see they’re over tired and stressed, sometimes it’s not wise to launch a conversation, even if you’ve got an issue that you really want to discuss. Play the long game. The reason these actions are so worthwhile is because your child’s sleeping difficulties may be an ongoing issue. And, as with any ongoing issue, the small things you say and do will rack up over time. So play the long game; if you both make sure that you use kind words, assure each other that there are solutions, remind them that you’ll make it through together as a family, bring them tea, offer them things, and try to show each other that you’re considering them. By staying positive and being loving in small ways, you’d be surprised how much difference this can make over time. Be prepared that you may not be rewarded for this in the short-term – sleep deprivation can cause us to miss the kind deeds that are happening right in front of us – but it will help in the long term. How you can help your child  86% of children with additional needs have issues with sleep, so if you’re experiencing difficulties, you’re not alone. There can be various reasons for this. It is important to seek medical advice to make sure there is not a medical cause for your child’s problem sleeping. There are also many different strategies and approaches to helping children sleep. We recommend that you always consult a GP or relevant health practitioner before attempting to change a child’s sleeping habits. And it may be worth seeking help from a sleep specialist, ideally one that understands sleep disorders in relation to your child’s condition. Regardless of what techniques you are advised on, or whatever techniques you’re currently trying, remember that improvements in a child’s sleep may take some time. Research suggests that after changes are made, improvements in a child’s sleep often occur gradually, and for some parents their child’s sleep problems become more challenging before improvements are reported [2]. If you’re trying new things, (for example, a new bedtime routine, withdrawal of attention during the night), you may also find that there is also an initial resistance from your child. In other words, it can be darkest right before the dawn, and parents may need to endure a short-term worsening of the problem [3]. Whatever your situation, you can read more about techniques, resources and organisations that can help you and your child sleep in Contact's guide for parents, Helping your child sleep available free to parents who contact their freephone helpline on 0808 808 3555, helpline@contact.org.uk References   [1] Tietze et al., 2014 [2] Stuttard et al, 2015  [3] Beresford et al., 2012
Article | children, disability, communication
4 min read
Agreeing on parenting styles
If you follow the news, or if you’ve recently picked up one of the many celebrity magazines that thrives on Hollywood breakups, you’ll know about the divorce between Brad Pitt and Angelina Jolie. According to the A lister couple, they made this decision because they couldn’t agree on their parenting styles. Whether or not this is the actual reason is another matter, but it raises an interesting question about the impact that parenting styles can have on couple relationships. Before we explore that, let’s just brush up on parenting styles. What are they? Well, broadly speaking, they’re just choices that you make as a parent for raising your child. And these choices can be wrapped up and categorised as a style. Here are the four most popular style categories [1]. See if you think any of them relate to your own parenting style. You may find that you don’t resonate with a single style, but perhaps fall somewhere inbetween.  1. Authoritarian parenting Authoritarian parenting is a style that is demanding and rigid. The parent puts strict rules in play and expects them to be followed, which echoes a kind of military approach. There’s little room for children to question why the rules are in place. “It is often effective in the short-term but children often rank lower in happiness, social confidence and self-esteem” [1].  2. Authoritative parenting This style is all about rules and guidelines with high levels of parental warmth mixed in. Parents still view themselves as authority figures, but are also responsive, caring and loving. It’s considered the most effective and beneficial style for children. “Authoritative parents are responsive to their children and willing to listen to their questions. They also concentrate more on nurturing than punishment. This style of parenting is generally thought to elicit the best outcomes for children and they are likely to be confident, more autonomous and more socially responsible” [1].  3. Permissive parenting Permissive parents tend to let their children have control most of the time, with little use of routine or boundaries. They don’t tend to view themselves as authority figures. Parents with this style are typically warm and loving and are extremely responsive to their child’s needs. “They tend to be non-traditional and lenient, often taking the role of a friend rather than a parent. This type of parenting has been linked to childhood adjustment difficulties.”[2].  4. Positive parenting This parenting style is authoritative, but it’s about empowering children, fuelling their self-esteem and giving them positive vision for their own future. While there is no agreement as to what constitutes positive parenting [3], positive parenting has been described as “accepting, warm, involved, sensitive, responsive, caring, and empathetic; social-emotional and cognitive growth fostering; and directive” [4]. "So, if me and my partner have different styles, is that a bad thing?"   Not necessarily. As long as you manage your differences by talking them through together and making your decisions together as a couple – your differing parenting styles don’t have to be a bad thing. Of course, this does rely on your communication being very good. If you’re struggling to talk about your relationship issues without falling out, then differing parenting styles could easily become another source of conflict. "So if we have the same parenting style, we’re good?"   Not exactly. You and your partner might share an “authoritative” style, but that doesn’t mean that all of your parenting decisions will align. There are still plenty of parental decisions that you might disagree on, and there are still lots of variations to an authoritative style. For example, you might believe that a child’s bed times needs to be routine-based, and your partner might believe that your child should go to bed when they feel ready to sleep. You both still see yourselves as authority figures, and you’re both adopting a loving approach, but you’re not in agreement here. All that being said, if you’re adopting the same style (in this case authoritative), then in general you will probably find it easier to make compromises and reach decisions together. "What about my child who’s disabled? Doesn’t that change the game for parenting styles?"   Often it does. Sometimes you can’t adopt the approach that you’d like to, perhaps because of different emotional reactions from your child, or because of the way that your child’s behaviour needs to be managed. This means that parents need to be even stronger with their communication, because with all these additional factors being thrown into the mix - it will be even more difficult to reach decisions together. This will require both of you to work hard, but the rewards of solid communication will justify the investment ten times over. This includes being reflective on what has worked and what hasn’t (tip: be critical of your own approach - it can change the dynamic of ‘my way versus your way’). "For disabled children, is one style proven more successful?"   Every disability is different and no two conditions are the same. But in the studies, the research revealed two interesting things.  1. Parents found that the authoritative style was less successful as the children got older. “This may be due to factors related to the children’s disability, the amount of repetition needed, the limited success that may be achieved, and other demands on parental time and energies" [6]. 2. Parents found that “there is an overall beneficial effect of positive parenting upon the functional outcomes of young children with developmental disabilities, regardless of disability type” [5]. In summary, positive parenting scores points across the board, and authoritative parenting scores points in the early days only. But of course, this isn’t by any means a ‘thus says the Lord”, but it’s a worthy discussion point to have with your partner. Talk with your partner about parenting styles, and make it a conscious thing in your relationship. Even by just thinking about one another’s parenting styles, you can get closer to making those decisions together that ultimately will shape your child’s world and your family dynamic.  References [1] Diana Baumrind (1991) [2] Benson, Buehler, & Gerard, (2008) [3] Russell and Russell, (1996) [4] Bornstein, (2003) [5] Dyches et al., (2012). [6] Woolfson and Grant, 2006
Article | parenting styles, disability
4 min read
Considering having another child
For any parents, having another child is a big decision that requires serious consideration. So, if you are thinking about having another child, it’s likely your discussion will be affected by the financial, social, and health factors already in play in your lives. As parents of disabled children, you may be feeling this even more strongly. Studies have shown that parents raising children with disabilities are more likely to experience mental health issues such as anxiety, stress, and depression, (Stoneman, 2007) as well as relationship difficulties and problems at work (Simsek et al., 2015). One study asked parents of disabled children their thoughts around having another child. The main concerns included: Having less time to care for existing children Not having enough money to care for another child Risk of health problems in the next child (Simsek et al., 2015) Siblings You may also be concerned about what kind of life another child would have as the sibling of someone who requires regular extra care. You might be worried that your next child would have a stressful life, or that you wouldn’t be able to dedicate as much time to them as you would like to. This is certainly worth considering - some studies have shown that siblings of disabled children can experience increased stress in their lives (Murray, 2000) (Javadian, 2011). However, there is also evidence of siblings feeling a positive benefit of living with a disabled sibling. Children who are involved in the care of disabled siblings can grow up learning to be more helpful and compassionate than other children, and may also develop greater emotional awareness (Javadian, 2011) (Fisman et al., 1996). How will having another child affect your relationship? While parents of disabled children are statistically more likely to separate (Gardener and Harmon, 2002) (Patterson, 2002), many couples have a much more positive experience, and find that their relationship is strengthened and their bond solidified. Parents of children with additional needs have to rely on each other for support, and this can benefit your couple relationship, bringing you closer together (Simsek et al., 2015). It’s likely that you’ll have a lot to think about as you make a decision around whether or not to try for another child. However, depending on your experiences, you may feel more confident knowing that you’ve made it this far, learning and growing together. Whatever other factors you need to consider, the fact that you are thinking about it at all could be a positive sign about the strength of your relationship as a couple, and your capacity as parents. References Cahill, B. M., & Glidden, L. M. (1996). Influence of child diagnosis on family and parental functioning: Down syndrome versus other disabilities. American journal of mental retardation: AJMR, 101(2), 149-160. Fisman, S., Wolf, L., Ellison, D., Gillis, B., Freeman, T., & Szatmari, P. (1996). Risk and protective factors affecting the adjustment of siblings of children with chronic disabilities. Journal of the American Academy of Child & Adolescent Psychiatry, 35(11), 1532-1541. Gardner, J., & Harmon, T. (2002). Exploring resilience from a parent’s perspective: A qualitative study of six resilient mothers of children with an intellectual disability. Australian Social Work, 55(1), 60-68. Javadian, R. (2011). A comparative study of adaptability and cohesion in families with and without a disabled child. Procedia-Social and Behavioral Sciences, 30, 2625-2630. Kearney, P. M., & Griffin, T. (2001). Between joy and sorrow: being a parent of a child with developmental disability. Journal of advanced nursing, 34(5), 582-592. Marsh, J. C. (2003). Editorial: Arguments for Family Strengths Research. Social Work, 48(2), 147-149. Murray, J. S. (2000). Attachment theory and adjustment difficulties in siblings of children with cancer. Issues in Mental Health Nursing, 21(2), 149-169. Patterson, J. M. (2002). Integrating family resilience and family stress theory. Journal of marriage and family, 64(2), 349-360. Şimşek, T. T., Taşçı, M., & Karabulut, D. (2015). Desire to have other children in families with a chronically disabled child and its effect on the relationship of the parents. Turkish Archives of Pediatrics/Türk Pediatri Arşivi, 50(3), 163. Stoneman, Z., & Gavidia-Payne, S. (2006). Marital adjustment in families of young children with disabilities: Associations with daily hassles and problem-focused coping. American Journal on Mental Retardation, 111(1), 1-14.
Article | parenting, disability, children
2 min read
Disabled children and interfering in-laws
When you’re the parent of a disabled child, there’s a lot of information to absorb. Some of this can be useful but, like all parents, you may also find yourselves on the receiving end of unsolicited tips, advice, and wisdom. When it comes from your in-laws, it can be hard to know where to draw the line. In-laws can be a be a valuable source of emotional, financial, and practical support [1]. Depending on where they live, they can be a useful source of childcare, and play a valuable part in helping your children develop new skills [2]. Many can represent a calming influence during new and stressful situations that they already know their way around. As a parent of a disabled child, the issue becomes more complex. There are medical, social, and educational factors to consider that your and your partner’s parents may never have had to deal with before. Even if their parenting expertise hasn’t gone out of date, it may not be relevant to your child’s specific needs. However difficult your in-laws might be, it’s worth remembering that they have raised children too – they even raised someone that you fell in love with! But that doesn’t mean they’re always right. If their attempts to offer support just lead to arguments, the support itself may not be worth the emotional price you pay for it [3]. As the parent, it’s up to you to accept or reject offers of support. While your in-laws may have some useful nuggets, you and your partner are the ones who have access to the full picture as to what’s best for your child. Annoying in-laws If your in-laws are constantly texting bits of unhelpful advice, or if they come to the house and criticise a routine that you’ve been working hard to establish with the support of your child’s care team, then you need to find a way to respond. While the most obvious and possibly most satisfying response is to tackle them directly, this could lead to unnecessary arguments. Even when you know you are right, you still run the risk of turning your in-laws against you and upsetting your partner. The most effective way to deal with interfering in-laws is to talk to your partner first [4]. Speak openly to your partner about how you feel and why you’re concerned. As with any difficult conversation, start by talking about your own feelings, stick to the issue at hand, and give your partner a chance to digest what you’ve said. Don’t criticise or attack your in-laws – your partner has had to deal with them a lot longer than you have, and you don’t want to provoke a defensive reaction! Differences of opinion When you become parents, your priorities shift and your relationships change. This can include a rise in conflict with your in-laws. If you get on very well with them, this might just mean a few tiffs but, if you’re already prone to rowing, things could turn very stormy [5]. This makes sense as there’s more at stake than before – the little things you used to be able to ignore now need to be addressed head-on. Like you, your parents-in-law want the best for your child. Unlike you, they’re not around every day to make fully informed decisions about what’s actually best. If they start getting more involved than you want them to, it can feel intrusive and controlling. This can lead to problems between you and your partner, as you battle to strike the right balance [5]. Creating an effective boundary can be difficult. You and your partner will have to decide what’s acceptable and what’s not. You might want to agree a strategy in advance – for example, any time your parents or in-laws offer tips, thank them, and let them know you’ll consider their advice. You and your partner can then discuss the advice in private and make an appropriate decision. Sharing information It can be very helpful to update your in-laws on any information you learn about your disabled child. This could include medical information, or any strategies you’ve learned from your paediatrician, speech and language therapist, or other trusted provider like a charity or the NHS. If you have this information written down or printed out, show it to them, or ask your partner to. Discuss the information to help them understand what you’re trying to achieve with your child. It may also help them understand that you and your partner are in touch with the authoritative experts so they do not need to worry constantly that you may be doing the wrong thing! Getting to know your in-laws better Being on good terms with your in-laws can have unexpected positive side effects. One study found that couples who have closer ties to their in-laws tend to be happier and more satisfied with their own relationships [6]. So, rather than shutting them out, ask yourself it it’s possible to get to know your in-laws a little better. Take the opportunity to learn more about your partner’s background; encourage your in-laws to talk about the family history and customs. These conversations can help you form a bond, and may even have a positive impact on your relationship with your partner [7]. If you continue to struggle with your in-laws, take some comfort from the possibility that things can improve over time. Even the most vocal in-laws are capable of changing and coming around to accept your way of doing things. References [1] Goetting, A. (1990). Patterns of Support Among In-Laws in the United States A Review of Research. Journal of Family Issues, 11(1), 67–90. [2] Enyart, S. (2012). The transition to extended family: Examining the links between turbulence and children-in-laws’ goals, topic avoidance, and relational outcomes. University of Illinois at Urbana-Champaign. [3] Schober, P. S. (2013). Gender Equality and Outsourcing of Domestic Work, Childbearing, and Relationship Stability Among British Couples. Journal of Family Issues, 34(1), 25–52. [4] Rittenour, E. C., and Kellas, K. J. (2015). Making Sense of Hurtful Mother-in-law Messages: Applying Attribution Theory to the In-Law Triad. Communication Quarterly, 63(1), 62–68. [5] Bryant, C.M., Conger., R.D., and Meehan., J.M. (2001). The Influence of In-Laws on Change in Marital Success. Journal of Marriage and Family, 63(3), 614-626. [6] [Timmer, S.G., and Veroff, J. (2000). Family Ties and the Discontinuity of Divorce in Black and White Newlywed Couples. Journal of Marriage and Family, 62(2), 349-361.   [7] Serewicz, M.C.M., Hosmer, R., Ballard, R.L., and Griffin, R. A. (2008). Disclosure from In-laws and the Quality of In-law and Marital Relationships. Communication Quarterly, 56(4), 427–444.
Article | grandparents, parenting, disability
2 min read
Being parents to disabled children: part 2
In part one of “The positives of being a parent to a disabled child” we found that, despite facing greater challenges, parents with a disabled child often reported that their child’s disability had a positive effect on their lives.  “Indeed, irrespective of the child’s impairment type (e.g. ASD, cerebral palsy), approximately two out of three parents in this study agreed that, overall, having a disabled child has been positive for their family.” We drew from a study of 175 parents and started looking at what they meant by ‘positive’. Here’s what else parents had to say: “I’ve become a stronger and more compassionate person”  When care and attention is highly demanding, sometimes people find out what they’re really made of, and what their relationship is made of too. Demanding times often reveal the point where your resolve begins to wear thin, or where you start to buckle. As a parent in this situation, the love for your child and your commitment to caring for them could strengthen that resolve in a way that surpasses your own expectations. Just as athletes can tap into a hidden pool of strength in the final lap of a 10,000-metre run, parents also find energy, patience and, endurance they didn’t know they had. As a parent, you face the added mental challenge of knowing you cannot quit or duck out but, much like that athlete, it’s your team of family, friends, and support networks that enables you to keep going.  "As a result of having a child with a disability, our family unit has emerged stronger" 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
2 min read
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