"WALK A MILE IN MY SHOES..." - AUTISM FROM A PARENT'S POINT OF VIEW

On The Couch has been very blessed to have a few followers of our social media pages indicating an interest in sharing their personal stories as parents to children with autism. One of these parents is Mrs Zimbili Mtshali, a mother to 2 kids, one of whom is Lethaba, her 7 year old boy who was diagnosed with an autistic spectrum disorder as an 18 month old toddler.

On The Couch had the pleasure of sitting down with Zimbili as she shares hers and her husband’s journey as parents to an autistic child.

OTC – As a parent who is walking the walk of being a mommy to your son with autistic spectrum disorder, how would you describe what this journey has been like for you? 

Zimbili – Firstly, autism spectrum disorder (ASD) is a developmental disorder. It affects how children interact and communicate with others. The disorder is called a spectrum disorder because children can be anywhere on the autism spectrum.

Being a parent to an autistic child is a life-changing lesson that my husband and I had to learn quickly. This is our world that we had to tour very fast so that we can be able to navigate it for our child until he can navigate it for himself. We had to learn a new language, consisting of big words such as development disorder and spectrum disorder. It was a lot to digest, honestly, in a short space of time.

OTC – There’s a saying that goes, "Walk a mile in my shoes … see what I see, hear what I hear, feel what I feel, then maybe you'll understand why I do what I do. Until then, don't judge me." What does this saying mean to you? 

Zimbili - I so wish our societies we live amongst could understand what it is like to bring up an autistic child? But then again, unless one "walks a mile in my shoes", they will never understand what I, as a parent to an autistic child go through daily. Society is quick to judge when my child is screaming at the shops because it lacks understanding. A little patience, a little understanding, and a little kindness go a long way, and we could all benefit from extending a helping hand where we can.

OTC – How did you find out that your son had an autistic spectrum disorder? Were there any signs you spotted? 

Zimbili – Our son was 18 months when our reality changed overnight. One day, we had this normal kid who was doing everything a typical toddler does, then boom, we noticed that he doesn't say "Mama" or "Tata" anymore. Overnight he had ceased to speak, and of course, we went to "Google", and the word AUTISTIC was flashing in all search pages.

OTC – Take us through the initial days of getting into terms with the diagnosis. 

Zimbili – No parent simply accepts that her/his child has a developmental disability. My husband and I were no different. Honestly, at first, we were in denial. We were scared. No one in our circle had autism or had an autistic son. We were overwhelmed with information and sometimes, lack of it. Doctors seemed clueless about the condition too. Watching and listening to them explaining our new world to us often seemed like a guessing game. This was until we found a Neuro-Paediatrician who threw some light on our somewhat confusion. Eventually, we had to adapt, learn, and, I must say, information is power. As soon as we immersed ourselves in learning about autism, things became better. We finally understood the fundamentals of autism, and my husband was very supportive.

OTC – What would you say have been the challenges you have encountered as you bring up an autistic child? 

Zimbili – Our son doesn't have a sense of danger which is potentially harmful. We had to safe-proof the whole house, paying extra attention to things, such as heights, darkness, sharp objects, because these to him are all the same to him. We quickly learnt the importance of this stage, especially when he has meltdowns, which we were clueless about the cause. Imagine not being able to comfort your distraught child. There was also potty training, which he mastered at 4 years old. We had to teach him to eat different kinds of foods since he was very particular at first. I was a lot we had to come to grips with.

OTC – How was your son’s condition accepted by your families? 

Zimbili – It is hard to raise an autistic child, period. It is expensive and texting too. There is no manual for it, and we learn as we go and adjust as our reality dictates. Family members were very hard to teach about our son's condition. They thought our son's autism was some "traditional" thing that needed to be fixed, and all was to be well. Some took his autism on him being spoiled and our parents failing to put boundaries for him. It's more frustrating when the family will reduce everything to "they are so intelligent" because it is really not helping. Yho, thinking back, it's been quite a journey trying to explain our reality to them and educate them about autism while ensuring that our child is treated with the kindness he deserves. More so when he often would be oblivious to other people's feelings but never intentionally.

OTC – I read somewhere that autistic children want to have control over their environment, to make it more predictable. How do you cope in environments that he is less familiar with, like malls and attending birthday parties? 

Zimbili – We consciously decided not to shield our son but expose him to environments that could pose a sense of discomfort, especially for him. Taking him with us to shopping malls was one of such decisions. This was so he could get used to being around lots of different people. Sometimes we live without any drama, but mostly there will be tantrums. He would want those expensive toys and wouldn't understand why we are not buying them for him. Despite him being autistic, we had to help him understand the word "NO", its meaning and be firm when using it. Birthday parties, what birthday parties? We don't even bother with birthday parties. He'll probably end up stealing the limelight with his stunts, LOL. Not forgetting the safety issue, since other people's homes and restaurants are not friendly to autistic children enough to accommodate them. So we find parks and big playgrounds more conducive for him.

OTC - "Child with autism", "autistic child". How do you prefer your son to be referred to? 

Zimbili – I have no preference, really. As long as the words are not meant to demean him or us, I'm ok. I understand that not everyone is familiar with the lingo. Some people don't even know what autism is. I didn't either 8 years ago. 

OTC – Through treatment many children learn how to communicate and interact with others. How has the communication in your home been like? 

Zimbili – Our son somehow finds ways to express himself without uttering a single word. We have learned to understand him. The autism sign language (ASL) that he is currently learning at school also helps. He is very independent and so impatient with us. He had to learn to do things for himself, and he prefers that to beg, except for the stuff he can't do on his own.

OTC – "The two most powerful warriors are patience and time." – Leo Tolstoy. What does this quote mean for you? 

Zimbili – It has been 7 years of lessons, tears, frustrations and blame games, but I can honestly say we are coping now, as much as we can. We have even become confident in the decisions we make. We trust our guts more, we seek advice, and continuous learning has become part of our lives. We have become empowered LOL. I have also been blessed with a great circle of friends. They are accommodative, they learn with us are so supportive. I wish for all moms of autistic children to have such friend. We also have Ziningi, who has been part of our lives for all my son's 7 years. I love that girl. She loves my son as if he was hers. God indeed chose her specifically for us, and I'm so grateful for that.

OTC – What is it that you wish society understood about living with autism and being a parent to an autistic child? 

Zimbili – I believe we all want to be loved, understood and accepted, whether we have been diagnosed with a disorder or not. We want to be seen and heard. Being autistic is no different. With that in mind, I have to be my son's voice until he develops his own. I have to navigate the world for him until he gets the grip of it. All in all, he is like every other child. He demands our attention like his sister, and he is so loving and so generous with his hugs. Therefore, until you walk a mile in my shoes as a mom to an autistic child, please go easy on the stares and gawk whilst my hands are full with my son's meltdown. Go easy on the judging too, believing you know the reason why, because you don't. Autism doesn't give breaks, and as parents, we just pray for strength every day.