Actually, I have a few.
When I was born, I got sick. There was a moment when my brain didn't get enough oxygen. My brain got damaged.
And now, I have disabilities.
We googled 'cerebral palsy' when we found out about my brain damage, when I was thirty days old. We didn't know anything about it, even though it is the most common physical disability.
We are still learning, every day, but we know a lot about cerebral palsy, now.
We share my stories because we want to raise awareness and help people understand my disabilities.
We want to create empathy and respect. We want people to celebrate my successes, because they know how hard I worked to achieve them.
We don't want pity. Ever.
And so, we acknowledge International Day of People with a Disability.
17 goals.
These are some of the personal goals I am currently working on:
- Developing my muscles so I am strong enough to walk to the beach in my walker. (I've done this once, but then had surgeries. I am working hard to build my strength back up. It's like going to the gym, everyday!)
- Learning to use my walker on grass and bumpy surfaces.
- Learning to stop putting my finger in my mouth. (This has become habitual and is starting to cause damage to my finger and gives me mouth cuts. We're working on it.)
- Enjoying school, by participating in the activities and showing how clever I am.
- Making new school friends, who recognise my determination and happy personality.
- Improving my vision, which we learned can be developed up until about the age of eight.
- Developing more words, and starting to use my voice to communicate.
- Continuing to use nodding and shaking to show people what I do and don't want, and becoming more decisive when doing it.
- Using the toilet in the evening. (I am good at this now!)
- Working on my core strength, so I can get stronger at sitting.
- Working at holding on to spoons and pencils, without letting them go.
- Learning to go to sleep earlier at night. Often, I am the last one in the house to fall asleep (though Mum tries to stay awake until I go to sleep.) My cerebral palsy often makes it difficult to fall asleep.
- Continuing to drink thickened water and making sure I drink enough, each day.
- Gaining weight. (I'm working on it!) This is something Mum and Dad get criticised about by the people who assess my development each year.
- Continuing to get happy results from my onocologist.
- Further developing my skills with the eyegaze, so I can start asking for things and choosing activities or food, etc, with my eyegaze ipad.
- Going on adventures - lots and lots of adventures.
We hide many of the real hardships and personal heartbreak.
We chose to look for the silver linings and to chase the rainbows, and we work on that, every day.
We want people to see me for the things I can do, not the things I can't.
We want people to see my personality - my cheekiness, my happiness, my courage, my determination and my care of others.
We want people to know that I am curious and want to learn.
We want people to know I am proud... so proud, when I achieve my goals.
We want people to believe... to hope... to celebrate, with us.
We don't want pity. I am doing so well, and I am so happy. I am so loved.
Why would people pity that?
We want people to recognise that I am non-verbal, but very loud!
We want people to recognise that I have a cortical vision impairment, but that I can see.
We want people to recognise that I have quadriplegic cerebral palsy, but that I never stop moving.
We want people to recognise that I have a wheelchair and that makes things challenging, sometimes, but that it should not stop me from having adventures.
We want people to recognise that I am a childhood cancer survivor. While this is not a disabiity, those long months of chemotherapy treatments and surgeries, the weeks of transfusions and sickess and my weakened immune system had a significant impact on my physical progress.
We want people to see me for the brave, courgeous, determined, cheeky, stubborn, loving, kind, caring and beautiful person that I am.
We want people to see those things before they see the wheelchair, the finger in my mouth and my cerebral palsy stricken body.
We want people to see me.
That's why we share my stories.
That's why we support International Day of People with A Disability.
Supporters and Believers.... Your belief in us and the support you constantly show us, make us strong. You help us get through our worst days.
For that, we are eternally grateful.
If you see someone with a disability, smile and say hi.
#idpwd #cerebralpalsy #corticalvision #wheelchair #nonverbal
#raisingawareness #nolimits #nevergiveup
Teeth to Brush
It’s A Good Time To Have CP
You Look Funny
My Cerebral Palsy OT Gear
One of Those Days
The Many Faces of Dexter
Cerebral Palsy Doesn’t Stop Me Understanding Stuff
Do You Have A Question?
Dexter’s Beach Dash
They Want Octopus Arms
Little Fingers Reaching
Something to Say But No Words to Say It
And Then, They Whispered about Me
What a Dollar means to Dexter
When Wheelchair Stops Being a Dirty Word
About the Sisters
Dexter's Cancer
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