Parents need to trust themselves

Emma McKinney interviews Razia, mother to a child with a disability, about R caring and advocating for a child with a disability

Razia is mother to Nura who has Cerebral Palsy with quadriplegia and Global Developmental Delay, which resulted from a lack of oxygen before and during birth. Nura had a difficult start as a newborn. In addition, Nura has Cortical Visual Impairment, which makes it difficult to understand what she is able to see as she is unable to verbalise what is visible. Five days after her birth, Nura was taken off life support, but she pulled through.

Razia (on the right) with her daughter, Nura (centre), and husband (left).

Together with her husband, Razia tried many traditional therapies including occupational therapy and physiotherapy. They also explored alternative therapies such as behavioural neuro- feedback therapy. Razia reflected on how Nura received physiotherapy as a newborn before they left hospital.

She shared how they integrate physiotherapy in all daily activities including dressing, feeding and moving. Nura uses hand and wrist braces, and foot orthotics. She has had some significant surgeries including a spinal fusion in 2015. These surgeries are always very scary as Nura has experienced seizures while under anaesthesia. The risk of complications, including infection, is high.

Razia and her husband know Nura better than any healthcare professional. They know when something is wrong (such as when she stops eating or gets very sleepy). When asked for advice for other parents of children with disabilities, Razia highlighted that all children are different; however, here are some ideas she wanted to share:

  • Allow yourself to grieve.
  • Don’t bombard yourself with too much medical information.
  • While information is important, it is also vital to remember that your baby is still your baby and that you need to bond with them.
  • Even though time in the intensive care is emotional, focus on your baby.
  • Try to nurse if you are able. But, also be prepared that your baby might not be able to nurse if they are premature or have a medical condition that prevents them from latching. Try Kangaroo Mother Care to help with bonding if you can.
  • Realise that you cannot “fix” your child. Trying to get them to “fit into” a neurotypical world is not helpful.
  • Don’t focus on the “normal” developmental milestones, let them go.
  • Parents need to trust themselves as they know what is best for their children.
  • Talk about future issues sooner rather than later, such as hysterectomies, which can be very emotional topics and require time to process.
  • While the path that every parent walks may be similar, their footsteps and pace will differ. Some arrive sooner while others later and that is okay.
  • Listen to adults with disabilities.
  • Speak with your child and include them in decisions about their bodies and health, especially when they are older. Don’t underestimate how much they take in and understand.

Dr Emma McKinney is a lecturer at the University of the Western Cape. She is also the owner of Disability Included, a company specialising in disability research, children, and employment of adults with disabilities. email: emma@disabilityincluded.co.za

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