From the Human Factor: The moments we become parents: Personal stories of love, fear and hope.
“I remember the morning of the 5th of April, 2006 - the first time I saw my son. He was very handsome. His father named him Ichumile, which means ‘the one who is to prosper’.
I couldn’t believe that I could give birth to such a wonderful creation. In his first three months, Chumi babbled and tried to imitate his sister, but after some time, I noticed there was something strange about how he responded to situations.
I couldn’t put my finger on it, but little things bothered me. His babbling suddenly stopped, and I noticed that he couldn’t climb the stairs, jump, kick or throw things, but I kept on telling myself, ‘he is just delayed - it will get better’.
The paediatrician referred me to a clinical psychologist, who diagnosed autism. It was a big shock. I remember my ex-husband asking if it can be cured - he was prepared to spend any amount of money to ‘fix the situation’.
When I heard from other parents what autism involved on a daily basis, I denied it at first, telling myself, ‘this is not happening’. I blamed Chumi’s father; I blamed myself.
And so our journey began. It featured various therapies: speech, alternative communication, occupational, physio and filtered sound training.
The Quest School in Port Elizabeth for children with autism was not able to admit Chumi as he was not potty trained, so he ended up in an early intervention learning centre that was very expensive.
Nine years of private school later, and I still couldn’t see that he had learned to do things on his own, let alone read and write.
I won’t lie, some days were incredibly hard. I struggled to cope, but I happened to be doing research on resilience at the time and that gave me hope.
I understood that to be resilient you need to have a support structure, information, faith, and be able to think differently, so I decided to apply those principles to my own situation.
When Chumi was 11 years old I decided to homeschool him. As a teacher-educator, I know how to design a curriculum and I also drew from my experience of interacting with him.
My focus was on helping him to acquire life skills and on being able to listen to stories, read books and count in a way that is suitable for him.
I made his learning resources from recycled materials and before long, he was learning to do things on his own with little help.
I started thinking about other parents with the same challenge, and so I launched a community of practice for parents of children with autism.
We make educational materials together, share strategies and brainstorm about how to adapt the materials and strategies to suit the needs of our own children.
Today Chumi is a happy 13-year-old and we are still homeschooling him. I realise that my attitude on this journey is key. Just like any mother, I had hopes and dreams for Ichumi when he was born, and I still do, but I have had to shift my ideas of how I will help get him there.
For example, if once I thought he might become a journalist, now I think is it not still possible for him to be a storyteller, but in a different way, perhaps through technology or through music?
To parents who recently discovered they have a special needs child: what you are facing is real, and it is hard, but you must know you are not broken, you will bounce back.
Sometimes I wish Chumi could say something to me, but then, when he looks at me and smiles, I always feel that he is saying something. That he is saying, ‘it’s all right’. I know now that having an autistic child is not a tragedy, but an opportunity. That is my message.”
This article forms part of DGMT’s Human Factor publication. Issue 2 explores the power of parents as their children's first educators and their right to continue to champion their children’s education throughout schooling. Read it online or request a printed copy at dgmt.co.za/the-human-factor.
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