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WORLD CEREBRAL PALSY DAY – READERS SHARE

JulieOctober 4, 2018

Given BJ lives with cerebral palsy it seems only fitting we share a story in the lead up to World Cerebral Palsy Day. Although we are happy to share our story, we always like to include a broader perspective and that’s particularly important when it comes to Cerebral Palsy. Although it is the most common physical disability diagnosed in children, I feel there are many misconceptions about it.

In Australia there are approximately 34,000 people with cerebral palsy. Worldwide, the incidence of cerebral palsy is 1 in 500 births. There are currently 17 million people in the world who have cerebral palsy.

We decided to ask our readers the same three questions to show the variety of experiences and ways Cerebral Palsy (CP) affects people.

Mary Elaine – Northern Ireland

Tell us a bit about your cerebral palsy and tell us how it affects you?I have quadriplegic spastic CP which just means I’m a girl who uses wheels, not heels and I use a powered wheelchair to get around. As well as my CP, I’m very fortunate to have the loveliest job (a psychologist researching sleep disturbances in CP), the best friends and family around and non-work days filled with animals, music and travel.

We’d love to hear about a travel experience you’ve had and what made it a good one.

The best holiday I’ve had (so far) has to be Iceland. We visited the Blue Lagoon, the beautiful Skogafloss waterfall, geysers and the Solheimmajokull Glacier. I had the assumption that Iceland could potentially be a tricky destination for me as a wheelchair user but that was not the case… it was snow bother whatsoever. From the assistance team in the airport to the staff and facilities at all the tourist sites, everything was made easy and reasonable adjustments were put in place as needed.

Tell us one thing you wish people would understand about your cerebral palsy.

CP is so different for everyone who has it and I know it affects everybody’s lives differently but from my perspective having CP is in no way “a bad thing”, it’s taken me places, introduced me to people and given me opportunities I might not otherwise have had. I’m not saying every day is perfect or free of frustration, but I think those experiences are part of everybody’s life in one form or another and maybe most importantly, those experiences help us develop gratitude for the things that matter.

Razia – Cape Town, South Africa

Tell us a bit about your daughter’s cerebral palsy and tell us how it affects her?Nura has opened a world of challenges, opportunities and adventures for us. We have to approach life from different angles in order to fully appreciate and participate on her terms, according to her rules, capabilities and capacity. Facing CP and HIE (Hypoxic Ischemic Encephalopathy) with a medically fragile child forces you to become proficient in all things medical, related to your child. We meet so many specialists and spend so much time in hospital that we have a list and go-bag always at hand.  We can rattle off her medical history and names of medications and dosages in our sleep. We do not take time for granted as nothing is guaranteed and thus every moment with our child is precious. We appreciate the smile we were told may never happen, we are proud of the occasional tantrums – as they are a sign of communication, and we love when she learned to blow bubbles and see the pure joy it gives her. We have learnt to let go of “typical and atypical milestones” as our lives are measured by smiles, warm cuddles and perhaps a few hours of uninterrupted sleep.

We’d love to hear about a travel experience you’ve had and what made it a good one.

A particularly memorable and enjoyable holiday for Nura was our first trip to Mauritius in 2011. We had an uneventful 5-hour, direct flight from Cape Town, South Africa to Mauritius. Her presence on the plane made an impression as neuro-typical children and families couldn’t believe we were taking her on holiday. Our hotel room was spacious with a “parking space” for the stroller, room to transfer on either side of her bed, huge accessible bathroom with a shower chair and a ramp to ease access into the bedroom. Our Universal Access room slept three (which we have subsequently discovered is not that common), was on the ground floor with sliding doors opening onto a garden and the pool area. The restaurant had ramp access and the staff was extremely attentive to her needs, dietary requirements and specifications.  Nura loved the chilled and relaxed atmosphere and we could see the calmness in her as she absorbed it all.  Each day was about taking it easy and doing what she could manage. There were no appointments for physio, no OT, no fitting of AFO’s, no check-ups, and she could feel the difference. Nura loves warm water so she was a fish in the pools and especially the warm Indian Ocean. Even the dolphins came into the Balaclava Bay – did they come to visit her? We’ll never know, but they were there. The boathouse staff was very helpful in getting us in and out of the pedalos and onto the glass bottom boat. They even carried her across the river mouth and embankment in her stroller. The holiday of doing “nothing” was actually quite exhausting.

Tell us one thing you wish people would understand about your daughter and her cerebral palsy.

Nura is a 14 year-old Titanium Warrior (her hero name given after spinal surgery fusing titanium rods and screws to her spine). She is a significant and valuable part of our family who should be included, appreciated and respected. Everything we do is to make life as meaningful and comfortable as possible for her. No therapy, surgery or medication we use is to fix her. She is not broken. She does not need fixing. She may be non-verbal, but she is not unresponsive. She is Nura.

“Nonverbal doesn’t mean I have nothing to say. It simply means you will have to ‘listen’ to me with more than just your ears.”  (Walking With Drake – Walk Down Autism Lane). Take a moment to stop and say hello, don’t turn your kids away. Nura enjoys listening to kids chatter and she will respond given the opportunity. 

Yee-Foong – Sydney, Australia

Tell us a bit about your son’s cerebral palsy and tell us how it affects him?

My son is 5 years old and has quadriplegic dystonic cerebral palsy. He was full term with a smooth pregnancy but unfortunately I had a very quick labour and he wasn’t breathing when born and suffered Hypoxic ischemic encephalopathy (HIE). He is non verbal, peg fed, has no trunk or head control and is dependent on us for everything. He has unstable epilepsy and receives various medications for the seizures and muscle spasms at eight different times of the day. We literally live by the clock. Our day begins at 5am and finishes at 11.30pm. We are exhausted. I’ve not had a full nights sleep in 5 and a bit years. Simple things are no longer simple. Once one thing is resolved another issue emerges – it is constant.

We’d love to hear about a travel experience you’ve had and what made it a good one.
To be honest, we’ve found it too hard to travel. There’s too much equipment to take and even though places say they are accessible it doesn’t meet our needs for bathing and sleep. It would be great if more places had adjustable beds for people who can’t sleep flat.
We’ve only found a few restaurants that can accommodate a wheelchair. Many place their tables and chairs too close together losing hazards for customers and waiters. but when we do get out and about we enjoy spending time as a family.

Tell us one thing you wish people would understand about your son and his cerebral palsy.

I wish people wouldn’t take things for granted. A mere cough for their child is ok. But for us it could mean choking, aspiration and hospitalisation. I also wish people wouldn’t stare and give the pity look. I would much rather a stranger come and ask me about my son than stare. We often go grocery shopping and everyone glances down at the wheelchair and then looks up and gives you that pity look.
Also even though our son doesn’t move much it doesn’t mean he’s asleep!

Emma – Gold Coast, Australia

Emma – The New Forest, EnglandTell us a bit about your cerebral palsy and tell us how it affects you?

I have severe dystonic cerebral palsy. It affects my whole body and my ability to speak and eat. It doesn’t stop me being determined, cheeky and excited about travel.

We’d love to hear about a travel experience you’ve had and what made it a good one.

I can’t pick just one. The best part is seeing family and friends who live in other countries. I had a gap year experience (5 months) in 2016 and also did Conductive Education (therapy) in England. That trip was travel, friends, family and work.

Tell us one thing you wish people would understand about your cerebral palsy.

My mother is not a super hero. Don’t patronise me. Don’t pat me, I’m not a dog.

FACTS ABOUT CEREBRAL PALSY

The Cerebral Palsy Alliance describes cerebral palsy as “an umbrella term that refers to a group of disorders affecting a person’s ability to move. It is due to damage to the developing brain either during pregnancy or shortly after birth.

Cerebral palsy affects people in different ways and can affect body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. Although cerebral palsy is a permanent life-long condition, some of these signs of cerebral palsy can improve or worsen over time.

People who have cerebral palsy may also have visual, learning, hearing, speech, epilepsy and intellectual impairments.”

For most people with cerebral palsy, the cause is unknown. There is no known cure for cerebral palsy.

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