My StoryUntil Now
Hi, my name is Caden and I am writing my story at age 7, through the heart and fingers of my mom.
I was born with low muscle tone and initially could not even sit by myself at 6 months. After months of physical therapy and occupational therapy, and my parents implementing the therapy in my day-to-day life I eventually learnt to do basic things, like a reflex reaction that comes automatically to many normal developing children/baby. Something, many take for granted. I eventually learnt to walk at about 2 years, after my parents were advised that this would not be a possibility. A daunting thought, but my parents pushed on a believed in me.
By this time, they also noticed a lack of speech and my frustration in not being able to communicate and express myself. More therapy needed …. more money needed…. This did not stop them and they made it happen and whatever cost and found me a speech therapist.
I was then diagnosed with developmental delays …. not reaching my milestones at the ages applicable. Where to from here? There was no clear direction, but mom and dad never gave up and neither did I!
We then came across a “special therapy” for me through the SNAP (Special Needs Adapted Program)program. Mom and Dad found themselves having to make a big decision as this was a little more unconventional than the normally therapies’ that we had encountered, but they followed their hearts and signed me up. Mom also gave up a job she has worked to achieve for so many years to help me and dedicate time with this new program to help me.
After a few months, we could see improvement! Social interaction, speech, being able to handle my emotions. Even though there was good and major progress, it was expensive and my parents and family chipped in and assisted where they could, and we hosted some fundraising events to help me get this therapy that was working for me , in order to keep me on the program.
The other challenge that Mom and Dad found, was finding a suitable place for me to challenged and educated. Special Needs’ Facilities had long waiting lists and crèches would see put me in a class for my age … but I had not developed to that age mentally and socially …. even though mom explained … they just did not seem to get it and fully understand and grasp my situation.
Due to this journey, Mom and Dad did not want other parents to follow the same path, thorough fundraising events, we in turn sponsored a few other kids who needed the financial assistance for their therapy so that they too could remain on the SNAP program. These contributions was a small difference my family made and as a family unit and it become Mom and Dad’s dream to assist others faced with what had been through.
This is where Caden’s Foundation of Hope NPC comes in! Obviously named after me …. but also to give hope to families and children faced with so many challenges.
So support us where you can. Through our fundraising events, donations, no matter how big or small… my Mom and Dad believed in me and through them, their friends and family believed in me…. that has made a big difference as now I am able to jump, climb, go to the toilet and even call out “ MOM”, “DAD”!
Thanks to Mom and Dad who believed in me, I have reached milestones they told Mom was unlikely if not impossible. (November 2015) After my visit at Red Cross on Tuesday, it seems I have a rare genetic disorder, Coffin-Lowry Syndrome (CLS). It is a genetic defect on the 22nd chromosome, x-linked one. We are glad we have a diagnosis, as my family can work towards helping me more going forward although there are complications that come with this diagnosis, so quite a few tests to follow. If there is anyone with the same diagnosis, let us connect.
My Mom, Dad and family believed in ME … Through them, you believed in ME …. Now it’s time for you to believe in others like ME! This is what Caden’s Foundation of Hope is all about and all the Fundraising. If anything, my family and I have been on this journey, that neither of us were ready for, not knowing what tomorrow held and how to deal with it. Through me always trying, mom and dad kept on trying … despite the challenges they faced in trying to get me the right help.
So please support our Fundraiser, whichever way you can, and help ME help others and make a difference in our community. Love Always, Caden xoxo
I love my school, teachers and how they too believe in me and help me grow and learn. Mom, Dad and our “family of friends” have worked super hard so me and my friends can have an awesome new school. We launch our bigger school on our new premises.
We urge you to join us on our journey, and make a difference in a childs’ life. Sponsor, Partner or Donate
My Teacher at school teaching me to climb and navigate the fireman’s pole on the jungle gym. Lots of concentration😏. Thanks Teacher J
Today was awesome, mom took me to City Rock for my 1st attempt at rock climbing. I had sooo much fun! And I am super proud of what I could do … Mom was afraid …. But she handled her emotions pretty well! Thank you Tamryn from City Rock — with CityRock.
Enjoying some Sunday duties with Dad. Great Fun!
Autism Month : Respect the Uniqueness…
#Memories Each child with autism is different. There are similarities. So I ask that you respect that I have challenges, respect that I understand and see things differently. Mom says I have a few unique qualities but what stands out for her is that it took me 4 years to learn to go the toilet daytime only. My other is that besides my autism traits I have a rare genetic disorder …. Coffin-Lowry Syndrome.
So I ask that you respect the Uniqueness of those around you …
Autism Month : Imagine the possibilities…
#Memories …. it was hard for mom and dad to initially get to grips that my life would be so different. While other families were out enjoying Saturday family time and Sunday special times, we were at therapy sessions with follow through sessions at home at every moment possible. We mainly visited family rather than friends in case I had an outburst. New environments, crowds, loud noises and lights were my main triggers. For months and every day mom would take me to our closest shopping area to teach me to manage these triggers … hard but mom could imagine the possibilities through perseverance. No matter how hard … keep going
Today, I was more brave than my Mom and Dad because I held a crocodile at the Le Bonheur Crocodile Farm! Look at me Mom!
Back to hospital …. left home very early. Fell asleep while mom drove. The bones in my feet are breaking off they say and accumulating in the soft tissue. Not sure why. Having an insert made today to see if it will help with the walking so that I don’t fall so much. — at Conradie Orthotic and Prostetic Centre.
But sometimes at least you meet a cool Dr from the UK
Today is my bi-annual check-up at Red Cross but also extra special as we will be handing out 150 sandwiches, water and apples to the children attending the clinic today. Many come from up country and sit and wait and end up hungry. Making a difference where we can.
After all the hard work was done …. A selfie moment always a must for me
Dad and I donating to our local Shelter
So my first day went off well. I made new friends. Never cried … But mom looked a bit sad when she had to leave. I felt right at home …. Thank you to everyone for your support on my journey and for helping to get me to this point but also for being part of starting a school for 6 special children. My Foundation will continue to help more special children who need help.
My smile says it all …. Grade 1 here I come …. pushing the bar for 2016