Parent Workshop Session

Nurturing the parent relationship when a child is diagnosed with disability – by Kate Strohm

Many years ago, at a parent workshop, a mother described how, when her child was diagnosed with a disability, she threw herself into finding the very best therapies/ disability support for her little one. It took so much energy, and she had little time left to think of anything else. She found out later that her husband had struggled with a range of feelings during this time, including the sense of loss that, given her particular diagnosis, he wouldn’t be walking his daughter down the aisle. 

Given the immense stress, it was hard for that couple to share and support each other, as they were in such different places while attempting to process their daughter’s diagnosis. The mother had blocked out any potential to explore her feelings and what the diagnosis meant to her, while the father was consumed by feelings of how the diagnosis had changed what the future would bring; neither opened up to anyone around them. Both parents were clearly struggling with their mental well-being in different ways.

Struggling Parents Relationship

There is no ‘right’ or ‘wrong’ in such feelings; they just are. However, such different responses can be difficult for each parent to understand in the other. A parent might feel… “Am I the only one to feel this way? Will my partner judge me if I share how I am feeling? How can he/she seem so distant or unconcerned?”

Communication is difficult at any time there is a crisis in a family. Of course, not all diagnoses are crisis points, but they do cause a major shift for a family. It might be a sudden diagnosis, or it may come after a long period of suspecting something might need attention. The challenges will likely continue with different stress points along the way, especially as children grow.

Fathers can sometimes feel left out and might believe they have let down their family. There is often pressure on fathers to protect their family, leading to feelings of failure. He might feel inadequate in supporting both his child and his partner. A mother, on the other hand, might grapple with guilt if she harbors any sadness or disappointment regarding the aspirations she had for her child, fearing this might imply she doesn’t love her child enough.

Research indicates that relationships within families that have members with disabilities can be subject to added stresses and might be at a higher risk of breaking down. However, it doesn’t have to be this way. Timely support can help couples navigate the intricacies of their new family dynamics, facilitating communication and mutual support, irrespective of individual responses.

Joyful Family Moments

Like all families, there will be moments of joy. Initially, these moments might be elusive. But as time progresses and with gained experience, many parents find the strength to reflect on and appreciate the positives. These could range from forming strong bonds with other families, celebrating their child’s milestones, recognizing their personal growth, or admiring the unity within their family.

Here are some ideas for maintaining your relationship:

  1. Recognise that we all respond differently – there is no right or wrong way to feel. Your responses will depend on so many things: your previous experience of disability, your belief system or faith, and the meaning you develop for what is happening in your family.
  2. Share feelings even if confused by them – talk about them in terms of the situation. You can feel angry and sad about what is happening while still loving and caring for your child. Difficult feelings are normal and do not mean you do not love your child.
  3. You might try to protect each other, but sharing can bring you closer. Sometimes one of you will be struggling, and the other will be able to provide support. At other times, the roles may reverse.
  4. If possible, ensure both parents are included in appointments with therapists for your child. This is much better than having to relay the information to your partner. It can also help lighten the mental load if two people are familiar with therapy plans or disability supports to be implemented.
  5. Remember, siblings will also need support to manage what is happening around them. Siblings Australia offers resources/programs to assist with this.
  6. Seek outside help through counsellors/therapists for coping skills to assist with your mental health and wellbeing. Sometimes, it’s easier to express your true feelings to someone who isn’t a relative. This will help you understand yourself and support your family. It might also be beneficial for the entire family to seek support from a family mental health support service.
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