My Story
Me, Mum.
My son finally called me mum. Sylvia Moraa tells Simon Mburu all about the challenges and joys of raising a child on the autism spectrum.
Birth has been a day with how it started in the last when my water broke.
Paperwork designs for the TPS Serena Rights.
I was admitted at the Family Care Hospital in Nairobi where a scan revealed that the doctors decided to wait no more. As 36 weeks in, I underwent an emergency cesarean section (CS).
I had palpitations and dizziness when I woke up following the CS. I was immediately sedated again. When I woke up again, I was informed that my baby had been incubated. But I insisted on seeing him. When the doctors attempted to bring him out, he started turning purple and they immediately put him back in the incubator. This was just one of the many signs that would come to show that all was not well.
There was play with all the other kids confused and watching.
During those tough times, some cursed us while others held my hand and stood strong. I quit my business which would allow me to take care of Andrew full time.
“A month later, my baby developed jaundice. He also started struggling to pass stool. We saw a gastroenterologist who diagnosed him with lactose intolerance and reflux. The doctor also noted that Andrew’s reflex was too high. Two months later, my dad noticed that his neck wasn’t as strong and steady as it was supposed to be. I also remember that at one point, I asked the doctor why Andrew kept shivering even when he was warmly dressed. He brushed it off and said that it was a habit that could soon end. But it did not. Instead, at seven months, he got a full-blown convulsion.
“At first, Andrew was diagnosed with general autism. Later, it was termed as a convulsive disorder. Earlier this year, his condition was diagnosed as Lennox-Gastaut Syndrome, a broader autistic spectrum disorder.”
“All along, I knew that my son would one day start walking very late, and he did. I have had to take him for speech therapy, occupational therapy, and physical therapy. He knows how to sing his name and is starting to sing songs. My son has also memorized some monologues from movies.”
“Looking back, I remember when I was pregnant that many people told me that my child had been cursed. Others whispered behind my back that maybe it was a punishment for something bad that I had done. But those who knew me stood strong. We have accepted our child’s condition, and we curse no one.”
“The effects of the convulsion reversed all the developmental progress he had made since birth. He forgot everything including babbling sounds. Watching my little baby go through all this was the toughest thing I had ever done. Depression crept up on me.”
“We went to the Aga Khan Hospital where we were referred to a pediatric neurologist called Dr. Oyatsi who recommended blood tests, an MRI scan, and an EEG. He also started my son on basic convulsion medicine. The tests revealed that my son had sclerosis in his head and high electric activities in the brain.”
“The final diagnosis of my son’s condition is Lennox-Gastaut Syndrome.”
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“A Journey of Love and Resilience: Raising a Child with Lennox-Gastaut Syndrome”
“A Journey of Love and Resilience: Raising a Child on the Autism Spectrum”