My name is Jan van der Merwe. I am 48 years old and live in South Africa. I am blessed with a wonderful supporting wife,Tertia and two beautiful boys Schalk (12) and Anton (9). This is the story of a family looking for solutions to move on with their lives. This is the story of a courageous boy to find his place under the sun. This is also a story of hope, compassion, sacrifice, determination and love!
Anton was born on a stormy night of the 1st of November 2008. Both my boys were born at home. My wife was a champion with the birth of both our boys. My eldest son Schalk could not wait to meet his new sibling. We didn’t know the sex of the baby so Schalk was very happy to meet his new brother the next morning. Everything seemed fine and our midwife was satisfied with the birth. At that stage we had no idea what was coming our way and life was good. As I am writing this a flood of memories and emotions are overcoming me. Our lives changed forever, and hopefully by telling you this story you will realize that there is always hope, and as parent to always follow your instincts. This new present that you received from above does not come with instructions or a manual, it is unique and one of a kind.
Anton was a quiet baby and he hardly cried (first signs?), and we had no reason to be concerned (or so we thought). We also didn’t have any friends with “special needs” children who could send us in the right direction. Anton started to walk at 10 months and that gave us a false sense of security that things are going to be all right. After year one we started to realize that things are not all good. He couldn’t potty train, he did not want to learn words, he was very sensitive to loud sounds and crowds, and his diet was very limited. Till today Anton’s diet consists of the following; chicken, boerewors, lamb chops, steak, biltong, dry wors, fish fingers, french fries, egg noodles, peanut butter sandwiches, bananas, apples, hot cross buns, cinnamon pancakes, doughnuts and oros.
It was also during this time that all of our closest friends decided that it was time to look for greener pastures in Australia. We lost our support group and we felt alone. We were on our own (that is how I felt) and realized that we as parents must take control and immediately took responsibility for our boys and our future.
It is amazing what happens to you the moment you take responsibility of your children. The Manual of life and the way things are suppose to be gets thrown out of the window. The moment I realized that we are in our own boat, our own course, set for our own adventure was the day that we turned the corner for the better. Don’t get me wrong; we went through ups and downs, laughter and crying, victories and defeats, making good choices and bad. The point I want to make is that we made a full commitment to Anton and that by helping him we are helping ourselves.
Chapter 3 Road to nowhere.
As Anton grew older, we started seeking help for him. At age 2 he still couldn’t speak. He also didn’t want to potty train and we also noticed that he doesn’t feel pain. I took Anton and Schalk to the Johannesburg Zoo one day. Anton loves animals and when he is with any kind of pet he is in a good space. As we entered the zoo he just started to run to the nearest birdcage. He was so happy and excited and poor Schalk had to run after him from cage to cage (thanks Schalk- we couldn’t ask for a better brother than you). I followed them at a distance keeping a close eye on them. After a while I realized that there was something wrong with Anton’s feet. My boys still love to go barefoot. I walked up to them and looked down at his feet. What the heck!! He was bleeding from both feet! I showed him his bleeding feet and all I got in return was a blank stare! I also got a nasty look from a mother with her toddler.
We took him to a speech therapist just before his 3rd birthday and she stated that he is behind in speech and language and referred us to a an occupational therapist and to take him to test his hearing. His hearing was fine, except for the fact that he had a middle ear infection. We gave him one course of antibiotics and it cleared up. We started speech therapy and occupational therapy, but did not see any progress at all.
It was a tough time for our family. Trust me : I understand what parents go through searching for solutions to make the best decisions for their children. We even had Anton at one of the top pediatric neurologists in South Africa. After a thorough examination and a few play sessions she was ready to talk to us. I will never forget that day because it changed our path with Anton for ever. Dr A looked at us and said that she wished she had better news. She couldn’t put Anton on the Autism spectrum or for that matter give us any new information to help us. “He is an enigma” she said. We have reached the end of our rope and we decided to change the course of our boat again.
We made the descision to stop the OT altogether. I decided to inform and empower myself by learning everything about autism, sensory and speech delay, and all other forms of disorders. It was a transisitional period for us. We decided to take a deep breath and just to give ourselves a brake. It is amazing what happens when you give yourself a breather. By taking a step back everything becomes clearer. You see the bigger picture and you connect with like minded people with like minded ideas.
It was around this time that I read a medical journal report on sign language and how it can help with speech. Something about the article just made me sit up. Is it possible? Can this work? My instincts told me I was on to something. I chatted to my wife and we decided to give it a go. Tertia went on a basic sign language course for children for two days. With new ammunition and hope we were ready to implement our new stragegy. Looking back at that time I now realize that we needed to go full circle to reach the place and situation we were in right at that moment. My eldest son Schalk (age 7 at that stage) decided that he was in charge of teaching Anton sign language. He has a lot of love and compassion for his younger brother. We under estimate the positive influence siblings have. It’s like passing on the relay batten when you are tired from running your leg of the race. In a couple of days we had our first breaktrough. One day when Schalk was signing the word “boat” Anton mimicked him and said the word! This was later followed by tree, water, grass, sun, dad, mom, grandma, grandpa and so on. I can’t describe the feeling we felt to hear Anton speak for the first time in 5 years! Victory sweet victory!
I would just like to say that we really appreciated all the hard work that the OT’s and speech therapist’s did for Anton. Anton still goes to his speech therapist. He speaks English and our home language is Afrikaans. We don’t care he is talking! All the hard work is finally starting to pay off. This taught us that at the end of the day it’s only the breakthrougs that count and that all the dissapointments and dead ends will fade away as long gone memories. This was a step in the right direction and we had a lot more confidence and believe that we are on the right path. Our next step was to see if we can improve Anton’s physical condition. His core strength, agility, spacial awareness and co ordination was really poor. I am a physical trainer and Anton was going to be my most important client of my life
Anton age 8