A non-profit organisation registered last year is advocating for parents and children with autism in Mitchell’s Plain.
On Saturday February 10, the NPO Autism Strong Academy invited parents and their children to have an open discussion at the Northwood community centre in New Woodlands on the challenges and triumphs they face.
Director of Autism Strong Academy, Ikeraam Mullins, 36, from New Woodlands, said they waited three years for his son, Mujahid, 7, to be diagnosed with autism. Mujahid is non verbal.
Mr Mullins said at 2 they discovered Mujahid’s speech was regressed, he was not giving vocal sentences. They reached out to their local clinic staff who told them they needed to get Mujahid in crèche. He couldn’t function there and they could not assist him, Mr Mullins said.
Mujahid was scheduled for an assessment to be diagnosed with autism but Covid-19 put paid to the planned assessment, said Mr Mullins.
“Everything was cancelled and that’s when we acted with pressure. We went to Mitchell’s Plain District Hospital who referred us to the Red Cross War Memorial Children’s Hospital where he was diagnosed at 5. It took three years to get diagnosed amid Covid-19. Assessments would take six months or more,” he said.
“Private healthcare costs an arm and a leg. Government healthcare often has delays and it’s a struggle,” Mr Mullins said.
Mujahid had speech therapy once every month for an hour. “The child won’t adapt to the concepts with that timeline, it’s not enough. They’re putting everything on the parent,” Mr Mullins said.
These challenges led to Autism Strong Academy NPO now advocating for parents and children with autism.
Lucrezia Carolus, 47, from Retreat who attended the event on Saturday, said it has been an arduous journey with her son Caleb, 13, with autism.
She had a difficult pregnancy, Caleb would cry often and they thought he was a colic baby. He was always staring at fans, anything that turned.
While Caleb reached all milestones he would not crawl; and he wasn’t making babbling noises like other children. Ms Carolus said he was non-responsive when they called his name, they thought he was deaf. At 11 he started saying phrases in movies, she said.
Caleb on the autism spectrum is a low needs support autistic, she said.
Smell and sounds could trigger a meltdown. Caleb suffers from sensory hearing and wears noise-blocker headphones. They have no TVs or radios in their home.
“People tend to fear what they don’t understand and make remarks. Some people are not as educated about autism. Caleb has opened my eyes. To us, love needs no words to communicate,” said Ms Carolus.
Grandmother, Lorraine du Toit, 76, from Colorado Park, said it was a challenge with her grandson who has autism but all the love and kisses are worth it now. “God will give you that strength through this journey to stand strong, to persevere and always believe.”
Within the next five to 10 years they are hoping to build a school for autistic children to accommodate the autistic environment as many families find it hard to find a good school, said Mr Mullins.
For more information about Autism Strong Academy, contact Mr Mullins via email at ikeraam.autismstrongacademy@gmail.com or on 081 441 3648.
