Three big misconceptions people have shown us, regarding Dexter and his cerebral palsy are:
- People with cerebral palsy can't learn. Dexter doesn't understand us and can't learn. Wrong.
- It's ok to stare at people with severe disabilities. It's ok to stare at Dexter. Wrong.
- People with severe cerebral palsy aren't happy. Dexter isn't happy. Wrong.
Before Dexter was born, we didn't know anything about cerebral palsy.
We googled it. We researched. We learned by watching Dexter.
In the last six years, Dexter's cerebral palsy diagnosis has been changed, a few times. Each time, the new diagnosis hurts. It's hard to hear how severe Dexter's disabilities are. It's hard to hear how much harder he has to work. It's hard to get your head around new terms and new goals.
Cerebral palsy is hard.
The daily struggle is hard.
The cost of everything is hard.
The strain on family members is hard.
Watching Dexter's body not responding in the way he wants it to... that's possibly the hardest.
It's not fair.
Maybe, some times, we make it look easy. It's not.
There are a few things we can do, for Dexter, to make his life a little easier.
- We can teach him that he can have a go at everything... We will find a way.
- He needs to believe in himself. He needs to believe that we believe in him.
- We need to raise awareness, so his community better understands his disabilities. Once people understand the disabilities, they can focus on Dexter and get to know him.
Cerebral relates to the brain and palsy is a lack of muscle control.
Dexter's cerebral palsy is a result of a lack of oxygen to his brain, when he was tiny. His brain and his muscles don't often understand each other, so Dexter's muscles don't do what his brain wants them to do.
There are four main types of cerebral palsy - spastic, ataxic, dyskinetic and a combination of the first three.
For each type of cerebral palsy, there is a wide range of severity. Someone with mild cerebral palsy may have a slight limp. Someone with severe cerebral palsy may require total support and may have difficulty eating, drinking and breathing.
Different parts of the body can be affected by cerebral palsy.
Someone with quadriplegic cerebral palsy has all arms and legs affected. Their head, neck and torso may also be affected.
Diplegic cerebral palsy affects both legs.
Hemiplegic cerebral palsy impacts on one side of the person's body, affecting one leg and one arm.
Triplegic cerebral palsy is when three limbs are affected.
Cerebral palsy is a widely diverse diagnosis. It is a life-long condition, but with therapies and assisted technologies, people with cerebral palsy are re-training their brain, improving muscle control and showing the world how determined and clever they are.
Dexter won't 'grow out' of his cerebral palsy. He won't wake up one day, and it will be gone. But, he will have life-long therapies that will hopefully help him to better control his muscles, enabling him to gain strength for sitting, standing, walking, eating and talking. We're also working on his vision, which was impaired when his brain was oxygen deprived.
Around the world, about 17 million people are living with cerebral palsy.
It's the most common physical disability in children.
For World Cerebral Palsy Day, we are going to look at some misconceptions about people with cerebral palsy; misconceptions related to Dexter.
This is wrong.
Dexter is clever. He understands. We talk to him about his surgeries, tests and procedures. We tell him more than many kids are told. We talk to him about his cerebral palsy and how it stops him from doing what he wants to do, like walking. We talk to him about being a good learner and listening to his teachers. We get him in trouble when he is doing the wrong thing.
Dexter has opinions, you just need to be patient enough to let him answer. (He can be cheeky, though, and may try to trick you! Watch for his cheeky grin while he does it!)
His sense of humour is amazing. It took a long, long time for Dexter to learn to laugh (not because he's not clever, but because his brain was damaged.) Now, Dexter sometimes laughs and it can be at the weirdest things. He has perfect timing and often makes sounds, joining in we laugh at each other and make jokes.
Dexter has shown amazing improvements with his vision, after the incredible work he is doing at school.
Dexter has a wider range of sounds, after learning the letters and sounds at school. He likes maths and he loves hearing people read stories.
Dexter is clever. He can learn. He does understand what you say.
Sometimes, the person comes right up to Dexter's wheelchair, standing and staring and staring. We tell him it's because he's so handsome and so awesome.
It's not ok to stare at someone, just because they have a disability.
It seems that many people think staring at someone in a wheelchair is ok. They seem to think staring at people with disabilities is ok.
Many people even get angry at us, when we ask them not to stare at Dexter; proving that many people think it's ok.
It's never ok to stare at anyone.
It's not ok to stare at someone, just because they have cerebral palsy.
It is ok to ask us about Dexter, so long as you are genuine and really care.
It is ok to talk about people in wheelchairs with your kids, but probably not in front of us. It hurts.
It is ok to say hello, even if Dexter can't say hello back.
It is ok to say something nice... something friendly and encouraging.
It is ok to smile.
But, it is never ok to stare.
Dexter has trouble smiling. His muscles don't listen to his brain; messages get lost. Brain damage makes it hard for Dexter to smile. Cerebral palsy has taken that from us. But, Dexter is learning to smile. He is starting to try to smile for photos.
Because we know how hard he has to work to smile, his smile fills our heart. And then, when he laughs, our hearts melt. It is still the most amazing sound.
Dexter might not smile, much, but you can tell when he is happy. He becomes more animated. He talks more. His hands move.
After a party or a fun activity, Dexter often 'talks' all the way home. He's non-verbal, so we can only guess at what he is saying, but the tone shows his enthusiasm.
When he has had a really fun time, or is really proud of himself, he will kiss us.
Dexter is very happy.
The things this little kid have gone through have broken our hearts, again and again. Those months in the NICU... So long before we could pick him up and hug him... Surgeries; groin hernia, testes... Countless tests and scans. So many needles his little hands are scarred and his veins are so damaged they are hard to find... Six rounds of chemotherapy and countless cancer-related surgeries... Femoral osteotomy and muscle release surgeries... Hours and hours of painful therapies...
Dexter went through a period of regular nightmares. The worst part was that Dexter couldn't tell us about them, so we couldn't help the bad memories go away. All we could do, was hold him.
Despite all of this, Dexter is one of the happiest, most relaxed and most patient kids I have ever known.
He is happy.
His life is beyond difficult, but Dexter is happy.
I think he chooses happiness.
He is a great kid.
Our lives are richer, because of Dexter.
Feel free to ask us any questions.
For more information about cerebral palsy, check out the Consumer Safety website.
This is an information fact sheet, about cerebral Palsy:
One of Those Days
The Many Faces of Dexter
Cerebral Palsy Doesn’t Stop Me Understanding Stuff
They Want Octopus Arms
Little Fingers Reaching
Something to Say But No Words to Say It
And Then, They Whispered about Me
Today, I Just Want To Be A Mum
Mum was Crying in the Ball Pit
My Walking Goal
What a Dollar means to Dexter
When Wheelchair Stops Being a Dirty Word
Stuck in a Rut
Embrace the Lion
I’m a Kindy Kid!
Dexter's First Month
Dexter's Cerebral Palsy
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