I’ve home schooled my son, Seth for a year now, and while it is fun for both of us, it is time for him to return to school, a special school. Seth is five. He has mild ataxia cerebral palsy. This is a brain abnormality that affects his fine and gross motor skills, as well as his speech. The cause is unknown, however, my gut feeling is that his condition might have been caused by his premature birth after a very long labour.
Labour of Love
I was only in the 33rd week of my pregnancy when I began having regular contractions at 15 minutes intervals. It was such a sudden onsets that I was stunned to find that I was already bleeding slightly. My husband rushed me to KK Hospital.
The doctors tried to delay my delivery with all sorts of medicines but to no avail. I continued to be in labour for three days, with the contractions coming at 10 minutes intervals. The pain was so unbearable that I begged the doctor to let me give birth but he told me he couldn’t because it was better for my baby to be delivered at full term.
On the third day, a midwife found that my cervix was 4 cm dilated. By the time my gynaecologist reached my bedside, it was 10 cm dilated and Seth was on the way. He was born at 10.04 am on February 3, 2000, weighing only 2 kg.
I still remember how he looked at me with his big eyes when I cradled him for the first time that morning. He was so tiny and his cry so weak that the paediatrician had to rush him to the neo-natal intensive care unit (NICU) for observation.
When my husband and I went to see our baby later, there were so many tubes in and around him, Seth needed all the help he could get to breathe and feed. It was heartbreaking. I cried and asked myself why this had to be his introduction into the world.
He stayed in hospital for three weeks. We were so happy when he was finally allowed to come home that I cooked all the food myself for the baby shower! Everything was set to turn out well. For the time being.
The Long Road
At nine months, Seth couldn’t sit by himself. Every time we raised our concerns, the doctors would say the same thing, that Seth might have developmental delays as a result of being premature.
But when he still couldn’t sit at a year and did not speak, my husband and I became very worried. We asked to see a senior consultant, who made an appointment for Seth to go for brain scan (MRI) and blood and urine tests. She also referred us to a neurologist.
From all the tests, Seth was diagnosed with mild ataxia cerebral palsy. My husband and I were devastated.
Since then, however, we have been investing all our time and effort on Seth. He was able to sit, finally, at 13 months, and started babbling when he was two years old although he still did not form words. He was walking by two and a half.
The neurologist asked me to put him in a special school, but since there was a six-month wait, I took him to see an occupational therapist in private practice. The therapist told me Seth has SensoryIntegration Dysfunction (SID) and that to help him, I had to brush him with a special brush and massage him every two hours, every day. I did.
When he started schooling at Margaret Drive Special School (MDSS) at age three, I even quit my job so I could spend the whole day with him. I was with him in school and at home I reinforced the teacher’s programme and occupational, speech and physiotherapy. This really benefited him.
After Seth had been at MDSS for half a year, I started him on private speech therapy at Leo Magan Speech Sanctuary with Magan Chen and craniosacral therapy at Healing Gardens with Kyoko once a week. There was significant improvement after a few months, Seth started to speak, and his first word
was “Daddy!”
Persistent Heartaches
Quitting my job was a quite difficult decision to make since it meant depending on my husband’s salary. Our finances were steadily depleted by Seth’s medical expenses, until my husband got a better paying job.
But nothing has been harder than watching the way other people stare at him whenever I take him out. They even ask me rude questions like “What is wrong with him?”
Some people look at him angrily for accidentally touching their things. I have lost count of the many times I have apologised to strangers when Seth has annoyed them unintentionally.
Still, I take him out often. Although he can’t do many things that other normal kids can, I try to let him participate in as many activities as possible. Because of his condition, his hands are always shaky and tend to be clumsy. He tries his best to do things independently, and I am proud of his efforts, even though I feel so sad for him.
Seth had to leave MDSS after a year. Its early intervention programme lasts until the special needs children turn four; only autistic and handicapped children remain there beyond this phase.
New Challenges
Through home schooling him, I have developed another worry, his behaviour. I have noticed that Seth has most of the symptoms of Attention Deficit Hyperactivity Disorder (ADHD). He can’t concentrate or focus, cant sit still, does not seem to listen when spoken to directly and often does not follow through on instructions.
A psychiatrist we visited told me it is too early to tell because he is only five, and because of his developmental delay, his thinking and behaviour is like that of a three-year-old child.
I surf the net and go to library to research ADHD, and have started watching Seth’s diet as well. I have even taken Brain Gym course and am doing exercise with him everyday. It is very difficult to look after a special child alone, especially when I also have to do the housework, but he is my special child; I will do anything for him.
My husband is very supportive. Together, I am confident that we can make Seth get better. Our son has changed our lives completely. We are better people and because of him, my husband and I grow closer everyday.
We feel great satisfaction with his progress. Seth can talk quite well even if his enunciation is still not clear. His gross motor skills are weak but his hand movements are not unsteady as they used to be. He has been reading since he was four years old, and he can spell and do addition and subtraction.
His memory is great, and his writing skills are improving.
It is a blessing to have Seth in my life. My goal is to see him become independent enough to take care of himself and have a great life in the future, so that when the time comes, I can die peacefully without worries.
I won’t give up. I am sure God has a terrific plan for Seth. We don’t know what it is now but we will know someday, somehow.
Seth started attending Genesis Special School in August 2005, his behaviour is improving and he is happy there.
Our Contributor
Our client, Silvia has kindly contributed this article to share her touching story. We wish her well and are sure her child, Seth will be in good hands.