“I remember the first time Agape called for me it was at night he woke up around 2 AM which is his favourite time to come to our bedroom I heard a voice calling for me and I thought it was his brother but the voice was different and much stronger, I couldn’t believe it, I asked him to repeat what he had said and he did, that was the most beautiful moment for us, I cried the whole morning because it was the first time he had ever called out for me.
Agape is my seven-year-old boy and he loves to sing and lights up an entire room with his smile At the age of three he was medically diagnosed with autism. His diagnosis came after we had noticed that he wasn’t reaching certain milestones that toddlers his age were and decided to visit a paediatrician.
It was only when our paediatrician referred us to a pediatric neurosurgeon who specialized in early childhood development conditions and autism, did alarm bells go off in my head.
This was when I started to do my research on childhood development conditions and at every search, autism popped up and I would think to myself ‘but this is how Agape behaves it’s like they are talking about him’.
Even though I had researched the topic I still felt a great sense of loss for my son when the doctor broke the news to my husband and me.
I went through all the stages of grief; except for denial and to this day I’m glad I immediately accepted his condition. This allowed me to act as quickly as possible to get him the help he needed.
My immediate reaction thereafter was, what do we do now to make his life as comfortable and happy as possible? I had to learn to document everything he does; subconsciously I was already doing this – now it was different because I had to write notes – I named them “project Agape”.
Some moments it became really difficult for me and I had to detach myself emotionally from him and become his advocate and not his mother.
I see my son beyond autism, that’s how I cope.
I wish I had a formula but there simply isn’t. One moment you think you’re coping and then a few minutes later your son is having a meltdown in the mall. These are days that are most challenging.
The one thing I struggle with is not knowing what’s next for him and if I’m prepared enough for it.
One person once asked me “would you take Autism out of Agape?” I said a big fat no, how can I do that he is my son and he is loved abundantly. He has led me to a road of self-discovery, unconditional love and makes me appreciate every moment of my life.
When you’re a parent to a child with autism your life becomes more about research, therapists and endless extramural activities which can sometimes get lonely because you don’t relate to many things. The only people who get it are other autism or special needs parents.
When Agape’s diagnosis came I wondered about education and currently, we have been blessed with a school and a team of therapists dedicated to his wellbeing.
He has been in early intervention since 2015. When we got the news that he would be going to Grade R in 2017 it was a breakthrough for us, this year he is doing Grade one and excelling.
My advice to anyone who is raising a child with Autism would be; don’t give up on your child, you are their best advocate and therapist.
Your child will fail many times but don’t see failure when you see them, see their fighting spirit and cheer them on.
Never let anyone disrespect your child because of their condition, they might not show you, but they feel those bad remarks and horrible looks.
You must learn to accept that not everyone will see your child the way you see them and that’s okay Your duty is to protect them from all the unkind comments. Trust me, in the beginning, you will want to educate everyone until you realize that you can’t teach some people and they will always see your child as an invalid person or “isidalwa”.
But your duty as a parent is to make your child feel loved and supported always. Autism is a scary diagnosis but remembers in all that there is a child and you must never let the challenges they experience cloud you from seeing that.
Let your child guide you in their world and if you don’t understand the journey ask for help, their therapists and doctors are there to guide you.
In closing, this country doesn’t have the most beautiful history when it comes to how autistic kids get help and are treated. The challenges are countless, and we need someone to listen to our stories and mostly our kids need to be heard.”