Oxygen: Caring for Ourselves to Care for Our Children
Parenting kids with a disability can sometimes be really stressful. This is especially true when children experience frequent or severe challenging behaviors. Unfortunately, self-care is not usually in the top 10 list of a parent’s daily priorities. It is, however, an important process that helps us parent in difficult situations calmly and successfully.
Over our many years of providing positive behavior support to families, parents have shared their innermost thoughts and feelings about coping in difficult situations and the strategies they have developed. These strategies often align with research-based practices on self-care.
What’s the issue?
This means that sometimes as parents we can unknowingly be part of the problem. How we react to challenges depends upon how we interpret the behavior and how we are feeling.
If we are tired, stressed, or misinterpret behavior or circumstances, we can react unproductively. When we experience these thoughts, our bodies also undergo changes. We can often feel our breathing become more rapid, heart rate increase, or muscles tense. Over time, these physical results of stress can have a long-lasting impact.
It is important to acknowledge that when things are stressful, it is very normal to have negative thoughts or feelings. Most parents experience these reactions. Parents shouldn’t feel bad about this or about making mistakes, just develop a plan to make things better. Just as airlines tell passengers to put on their own oxygen mask before helping others, parents can prioritize their own self-care, knowing that it will benefit the whole family.
What can be done about it?
Things usually go better when you make a plan than if you try to wing it. We use a simple structure to help parents develop their own self-care plan.
1. We start by thinking about behaviors that challenge us and why.
Some challenges stress us more than others and it is helpful to list these and understand why they provoke reactions from us. Parents have listed behaviors such as ‘hurting siblings’, ‘saying “I don’t love you”’, ‘spitting’ or ‘self-harm’ for example as particularly problematic, but everyone experiences these differently. Parents also identify other situations that may emerge with their children (e.g., getting a negative call from school, not being able to finish a self-care routine or chore) as provoking similar thoughts and feelings.
2.We then list the thoughts and the feelings that follow, acknowledging these are normal human reactions.
It is easy in challenging situations to think negative thoughts and to feel overwhelmed and to judge ourselves negatively. Common patterns of thinking that can be problematic include questioning efficacy (e.g., “I can’t, my child can’t, what did I do wrong?”), assumptions about intent (e.g., “my child is doing this on purpose to hurt me”), and overgeneralization (e.g., “this happens all the time, this will never get better”).
3.Once we know how we think or feel, we want to examine how we react (i.e., what we tend to say or do) when we have negative thoughts and feelings in challenging circumstances.
When stressed, we are likely to underreact by just ignoring or leaving a situation that should be addressed or over-react by becoming coercive or punitive (e.g., yelling, threatening). This can make the situation worse and, if occurring regularly, can affect the relationship we have with our kids.
4.We can use this information to plan to promote more positive thinking, thereby replacing or reducing negative thoughts.
There are a range of positive thoughts that can help from ‘it will pass’ to ‘it’s harder for him than it is for me’. When things are going well, it is important to acknowledge the ‘positives’. Research has shown that positive problem-solving thinking can increase the effectiveness of positive behavior support.
5.We can do things to diffuse the situation or reduce stress in the moment.
Mindfulness practices and other stress-reduction techniques can help release the physical and emotional tension, making it easier to reframe our thinking and regulate our reactions. Some of these strategies can include taking a few deep breaths, tensing and releasing our muscles, using visual imagery, employing grounding procedures (e.g., pushing soles of feet into the floor). Here is a free app for these types of practices: Practiced Mind
If it is possible, we might also be able to change the situation to diffuse the problem. This may include walking away or changing the activity.
6.Finally, we can develop a plan to take better care of ourselves in general so that we have the energy and patience to handle issues going forward.
To return to the analogy of putting on our oxygen mask first, we need to consider what activities “fill our buckets”. These may include long baths or showers, playing games, listening to music, exercising, reading, or chatting with an understanding friend. Longer term strategies might include planning to learn something new or a longer catch up with other parents or support professionals. We may also want to build in more time to reflect and plan.
Below is picture of a white board from a brainstorming exercise of a similar process with a group of parents in Australia. Please note that no one strategy is right for every parent. You can generate great ideas and advice by sharing with others.
Callum’s family strategies
Callum is an amazing young adult with an intellectual disability and autism. Parenting has not always been easy. His family shared some of their perspectives and strategies for parental self-care:
We embraced Callum’s diagnosis because we finally had a label. Our attitude was “It is what it is” – “We’ll deal with the hand that’s been dealt”. Such clichés really have helped us as a family since we are very matter of fact. That doesn’t mean we don’t advocate for Callum to be the best he can be, but accepting the diagnosis reduces our focus on negatives. Our family has learned not to sweat the small things – the household jobs will get done – might not just be today and that’s OK. Even when Callum’s behavior was very difficult (resulting in damage to the house or injuries), we have always held the belief that we are the lucky ones and that there are others far worse off than us.
We have always looked to not define Callum by his behaviors, but rather look to all the brilliant independent things he can do. It helps separate Callum from his behaviors and allows us to deal with what at times can be challenging and confronting situations. Some days one of us may ‘tap out’ and need to leave. We learned to accept that taking a break is and if you need to take time then do it – there is nothing wrong with that. It allows us to re-gather.
It is important to remember that stress is not a problem inherent to parents of children with disabilities and there is much joy in parenting. However, when parenting does get stressful, it is helpful to acknowledge this, accept it, and make a plan to prioritize wellbeing.
Meme Hieneman, has a Ph.D. in Special Education and is nationally certified as a behavior analyst. She has published a variety of articles, chapters, and books including “Parenting with Positive Behavior Support: A Practical Guide to Resolving Your Child’s Difficult Behavior.” In her professional career, Meme has worked with children with severe behavior problems for more than 20 years.