Enjoying the joy of parenting

Parenting is a rollercoaster ride of highs and lows, but when you add living with a disability into the mix, there are extra challenges to contend with.

 

By Melanie Louden

Cerebral Palsy Society members Kris Edwards and Tiresa Sio say when you live with Cerebral Palsy (CP) – Hōkai Nukurangi, there is a sense of fear and nervousness in the early days of parenting.

But when they each made adjustments and gave themselves some breathing space, they were able to “enjoy the joy” of parenting.

Kris, dad to 14-year-old Caleb and stepdad to Zac, 22, says he had “lots of fears” and was “secretly stressed” about having a child with Cerebral Palsy. 

“The second [Caleb] was born I checked his legs! I had concerns about how much my CP gets in the way of raising a child and how much more pressure that puts on my wife.”

Kris, who is GMFCS 2, says there were practical and physical concerns that he had to consider including the impact lifting and carrying Caleb would have on his back.

“I also was genuinely worried about dropping him or falling over while holding him as my balance wasn’t great, which did happen a couple of times. Thankfully I have mastered the art of falling safely so no harm was done to either of us.”

The Auckland resident says the key was finding ways to work around his CP so he could be fully involved as a parent and enjoy it.

For example, Kris helps train Caleb’s rugby team and ensures other people demonstrate the drills. When he went to school camp Kris arranged for teachers or other parents to help with their gear so he “didn’t look too awkward”.

“A key learning was to accept my limitations and work around them,” Kris says.

Tiresa, mum to Callan, 27, says parenting was “mostly easy” until she reached her 40s and the physical impact of CP became more noticeable.

“My mobility gradually declined, fatigue became harder to manage and everyday tasks started taking more out of me physically than they used to.

“Even with those challenges, I remained very involved in my son’s life and upbringing. I think living with CP taught me resilience, problem-solving and adaptability – qualities that also shaped the way I parented.”

Tiresa, who is GMFCS 3, says there was not much information available to her about being pregnant or parenting when you live with a disability.

“A lot of what I learnt came through lived experience, adapting along the way and figuring out practical solutions that worked for me as a mum.” 

English is a second language for Tiresa and she says looking back on her experiences highlights the fact that “language barriers, access to information and how many disabled parents simply had
to ‘work it out’ without tailored support” often gets overlooked.

Tiresa says while she did not have a lot of formal information, she was very well supported by her GP, midwife and her “biggest support” – her mum, who stepped in a lot, especially with bathing and some of the more physical tasks as Callan grew older and was on the move.

“One thing I wish I had known earlier was that it was okay to adapt parenting in ways that worked for me and that asking for support did not make me any less capable as a mother,” Tiresa says.

“Support made it possible for me to parent confidently and safely, while still being fully present in my son’s life.”

One of the hardest things about being a parent with CP came later in life for the Christchurch resident as her mobility gradually declined and she had to rely on Callan more for support.

“That was also when he truly began to understand the extent of my disability,” she says. “Without hesitation, he stepped into the role of becoming my full-time carer.

“As a mother, that role reversal was emotionally difficult at times. I always wanted him to fully experience life first – to explore the world, build his future and enjoy being young. But his love, loyalty and willingness to support me never wavered.”

Both Kris and Tiresa agree that their children have learnt a lot from being the child of someone with a disability. 

“Caleb is comfortable assisting anyone who needs help,” Kris says. “If anyone at school needs help carrying anything, opening doors, with their shoes, he’s there. He is patient, accepting of others and just very ‘can do’. It’s great to see.”

Tiresa says from a young age, Callan learned compassion and understanding and how to adapt to different situations naturally.

“Disability was never something unusual in our home – it was simply part of our everyday life.”

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* You can read more from Kris and Tiresa here: 

 

* Kris is the host of The Cerebral Palsy Podcast. You can listen here.

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