Parents with disabled children: separated families

If you have any children with disabilities, you are likely to face some unique challenges as a family.

If you and your partner separate, these challenges will change shape as you step into a new co-parenting relationship.

ASD/ADHD diagnosis
What am I dealing with? While some disabilities and conditions can be diagnosed early on in a child’s life (perhaps even during the pregnancy), others can take a lot more time, which can be difficult for parents who are waiting to find out. Sometimes parents have this wait for several months or even years after the baby is born – this is particularly common for children with an Autism Spectrum Disorder (ASD).This time of limbo can also be a time of friction for divorced or separated parents, as they might argue about what issue the child has or how to cope in the meantime. Why is communication so difficult? ‘Disability’ is a very broad term, and each disability or condition will affect the individual and their families in different ways. Where certain conditions are harder to diagnose like autism or ADHD, studies have shown divorced parents will typically argue over whether or not the child has the condition they suspect(1). They also argue a lot about the steps that need to be taken to getting a diagnosis. As the loving parents of your baby, one (or both) of you might be struggling to accept that your baby could have a disability and feel reluctant about having your baby tested. This form of denial means that, as separated parents, you might also find it difficult to talk about things practically and realistically. Parents that support their child’s additional needs as a couple living together can create routines, rules and a home environment that work for the child. Whereas living apart means that two sets of rules and routines are running separately. For a child that suffers with ADHD or ASD, this can be an even greater problem as they may not adapt well to change. Even following a diagnosis such as ADHD or ASD, it’s not as though there’s then a right or wrong way of raising your child. There’s no rulebook – it’s all about learning about your child as a person and how they handle their condition, then applying the medical knowledge of the condition where you can. And because there’s no right way or wrong way, one parent may think they understand the condition better than the other, which can lead to conflict. If one parent spends more time than the other with their child, they may feel they have closer first-hand experience of the disability. This can cause one parent to feel they are better informed to take lead in the decision-making. How do I help the situation? Learning to communicate better is even more difficult if you’re divorced or separated. But communicating better with your ex could make everyone’s lives a lot easier, including your child’s. Coming to terms with a potential disability is tough for any parent. And if your partner is showing signs of denial, you will need to talk to them sensitively given that they are using this denial as their coping mechanism. Try to approach the subject with care and take it slowly – they may just need some time to come around. Always try to be positive, even though this is a tough conversation to have. While your romantic relationship is over, the relationship still functions in a different capacity as parents – that relationship still needs work and effort. Although this is certainly easier said than done, try to put aside your feelings for the good of your child, and encourage them to do the same. You can still show one other respect, particularly where shared decisions need to be made. A recent US study found that: “In many divorced families, conflicting parental viewpoints are especially apparent when children do not have equal time in both households (1)*.” In other words, when the child spends more balanced time with both parents in their homes, the parents are less likely to clash. This likely comes down to the parents feeling that there’s a shared effort where both parents are playing their parts. Another way you could improve communication is with the help of a parenting plan – one that you don’t have to complete together in the same room. Parenting plans like Put Kids First are online, and enable you to work together separately in a more seamless way to help reach decisions without conflict or fuss.  References: [1] Pickar, Daniel B., and Robert L. Kaufman. “Parenting Plans for Special Needs Children: Applying a Risk-Assessment Model.” Family Court Review 53, no. 1 (January 1, 2015): 113–33. * Note: this research relates specifically to parents that have children diagnosed with ADHD.
Article | disability, children
4 min read
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 like “Splitting Up? Put Kids First” will 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
4 min read
Co-parenting a disabled child
All relationships go through periods of change and challenge. Some parents find these experiences bring them closer together, while others are overwhelmed by the experience and struggle to stay together. If things have broken down and you have decided to separate, we have some hints and tips to help you carry on caring for your child, whether you live with them or not.No longer living under the same roof as your children will inevitably affect the level of contact you have with them and it will usually be necessary to agree contact arrangements with your former partner. Legally, a person with parental responsibility cannot be denied contact with their child without the intervention of the courts. Of course, it will usually be best if both parents can discuss and agree appropriate arrangements informally. You’ll need to work together with your ex to ensure you can provide the full support your child needs from both parents. Parental involvement is one of the most important factors in how disabled children integrate into school and social life [4] and non-resident parents play an important role in this [5]. As separated parents, working together makes you more effective at providing a responsive parenting role, and more likely to have a better relationship with your child [6].This kind of collaboration between separated parents is known as co-parenting. Communicating with your ex For some parents, having to maintain contact with one another and sort out arrangements for the children can be a huge strain. If you’re still upset with your ex-partner, you may be finding it difficult to communicate with them. However, it’s important to try and set your disagreements aside long enough to get your living arrangements in order and make a collaborative parenting plan that means your child has a stable environment or environments where they can get the best possible support from both of you [3]. Here are some tips to help you communicate with your ex and protect your children from any fallout from the separation:   avoid blaming yourself or your partner agree not to let your own relationship issues get into the discussion create some rules together about how best to manage meetings continue at another time if you feel discussions sliding into tricky waters don’t communicate with your partner through your child focus on child-related issues; it can help keep your dialogue clear and to the point work on a parenting plan together don’t argue with your partner about the children in front of them. This will only increase their sense of guilt and blame about the break up. Supporting your children Helping your child through a period of separation or divorce is challenging as you come to terms with your own feelings. But there are things you can do that can help. Keeping children informed about what is happening will help to prevent them blaming themselves and worrying unnecessarily. You can help children feel more secure by helping them to express their feelings, letting them know that you understand how they feel, and making sure they feel they can ask questions if they want to, will help. Children often feel a great sense of loss and letting them grieve is an important part of helping them to deal with the situation and to move on to accept the changes in their family relationships. They may also express anger towards you, whilst this can be hurtful, try not to take it too personally as it can be a sign they are finding it hard to cope. Denial is also a common response. A child will naturally have hopes and fantasies about the family, such as wanting you all to be reunited. Talking about these feelings, without raising false hopes, will help your child to move on. Avoid criticising your ex-partner in front of the children. It can be very upsetting for them and leave them feeling forced to take sides. Mothers and fathers Research has shown that mothers and fathers of disabled children can experience stress differently. Mothers’ stress tends to be focused around the daily caring tasks [7], while fathers are more likely to worry about their emotional attachment with the child [8]. If you are the parent with the main caring duties, you may need to ask for some extra support from friends and family to help you stay on top of daily care. If you are the non-resident parent, you may want to schedule in regular phone calls between visits to help stay in touch and maintain the connection with your child. Working together As a co-parent, you still have a parenting role to perform, even if you don’t live with your child. While you may not be in a couple relationship anymore, you and your child’s other parent will need to maintain a co-operative parenting relationship to give your child the maximum benefit of your care. If you are the resident parent, part of your role will be to share information with your child’s other parent and, assuming it is safe and meets any court requirements in place, ensure that they have access to your child. While it can be hard to let your ex-partner into your routines, it’s important to be open and welcoming for the sake of your child, particularly when there is important information to share about medical care and other additional needs [1]. Face-to-face visits are the best way to maintain good quality parent-child relationships but if you live a long way away from your child, frequent contact through emails, phone calls, or video calls can help make up for some of this distance [9]. Staying in touch with your ex can also help you plan for unexpected events, like your child leaving something they need at the other parent’s home. You don’t necessarily have to spend intensive time together, as long as you both commit to the agreed arrangements and stay in touch about important decisions. If you are struggling to maintain a good relationship with your child’s other parent, you can use the free parenting plan at Splitting Up? Put Kids First to keep on top of parenting arrangements without having to interact directly. References [1] Newacheck, P. W., Inkelas, M., & Kim, S. E. (2004). Health services use and health care expenditures for children with disabilities. Pediatrics, 114(1), 79-85. [2] Roberts, K., & Lawton, D. (2001). Acknowledging the extra care parents give their disabled children. Child: care, health and development, 27(4), 307-319. [3] Shandra, C. L., Hogan, D. P., & Spearin, C. E. (2008). Parenting a child with a disability: An examination of resident and non-resident fathers. Journal of Population Research, 25(3), 357-377. [4] Pascall, G., & Hendey, N. (2004). Disability and transition to adulthood: the politics of parenting. Critical Social Policy, 24(2), 165-186. [5] Amato, P. R., & Gilbreth, J. G. (1999). Nonresident fathers and children's well-being: A meta-analysis. Journal of Marriage and the Family, 557-573. [6] Sobolewski, J. M., & King, V. (2005). The importance of the coparental relationship for nonresident fathers’ ties to children. Journal of Marriage and Family, 67(5), 1196-1212. [7] Pelchat, D., Lefebvre, H., & Perreault, M. (2003). Differences and similarities between mothers’ and fathers’ experiences of parenting a child with a disability. Journal of child health care, 7(4), 231-247. [8] Cohen, M. S. (1999). Families coping with childhood chronic illness: A research review. Families, Systems, & Health, 17(2), 149. [9] McGene, J., & King, V. (2012). Implications of new marriages and children for coparenting in nonresident father families. Journal of family issues, 33(12), 1619-1641.
Article | co-parenting, parenting apart
5 min read
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