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Malakhai and Nathaniel
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Malakhai and Nathaniel

Cerebral palsy from a big brother’s perspective

Last March Break, Malakhai and Nathaniel were on the beach on Florida’s Sanibel Island and it was hard to know which brother laughed more.

Under a hot sun, they swam and played in the sand, and generally loved every minute of being away from school.

It seems sand and surf has become somewhat of a family tradition.

For March Break the year before, their entire family traveled to Bahamas. This time, they weren’t alone in the water.

Each took a turn swimming with dolphins. Nathaniel absolutely lit up as the dolphins played around him.

It’s hard to believe there was a time when Nathaniel didn’t like the water. But Malakhai can remember when Nathaniel didn’t want to get into a pool, let alone an ocean.

That led to Malakhai attending the sibling program at Holland Bloorview’s pool. Once he saw his older brother enjoying himself, Nathaniel quickly changed his mind and his attitude.

Not defined by disability

When Malakhai, now 15, talks about his ten-year-old brother, that’s what he enjoys talking about most – shared experiences and memories, things they like to do together.

Not the fact he has a disability.

Nathaniel has cerebral palsy that affects his muscle tone in all four limbs and his ability to hold things for long periods of time.

He’s non-verbal and his hearing fluctuates. (To help his hearing, he wears a cochlear implant on his right side, and a hearing aid on his left.) And to communicate he uses an adaptive iPad to help identify what he needs and wants.

Malakhai’s take on talking CP

May is Cerebral Palsy Awareness Month so Malakhai is happy to talk about his brother, but he would prefer to take a bit of a different approach.

Sure, understanding what the condition is, and how it can affect someone is important. But equally, if not more important to him, is the idea that kids with cerebral palsy are just kids – kids who want to have fun, play video games and sports, just like any other kid.

And…they should be treated as such.

So he would rather share things like the fact that like many kids, Nathaniel loves animals, including horses.

The brothers saddle up together for a ride every week at a farm in Stoufville, Ontario. Nathaniel even has a favourite horse named Abbey.

Back home, the animal adventures continue.

The family home is filled with wagging tails – a Chihuahua named Damsel, a mixed-breed named Mr. Chips, and Achilles the miniature poodle. (There’s a cat too.)

They sometimes have to battle for space on the couch to watch TV together or play video games.

Minor disability difficulties

Malakhai admits that growing up with a brother with cerebral palsy does bring with it some challenges, but they’re relatively minor.

“Just going places that don’t have accessible areas like ramps can be frustrating,” he said, adding it’s annoying to go somewhere and discover there’s no way for Nathaniel to fully enjoy a place.

And sometimes other people’s reaction to Nathaniel can also be off-putting.

“People sometimes walk past him and just stare,” said Malakhai.

Younger teaches older

Though Nathaniel doesn’t know it, he’s taught his older brother an important lesson.

“He’s changed the way I see people with disabilities, changed my perspective,” said Malakhai. If he happens to meet someone with a disability, “I just approach them and I treat them like I would any person,” he said.

He simply sees them as people, not as people with disabilities.

What lesson does he wish others would learn during Cerebral Palsy Awareness Month?

“Just because you have a disability doesn’t mean that you can’t still be happy and have good moments,” said Malakhai. “My brother is happy and active. He’s not miserable or in any pain…he’s very content.”