Please introduce yourself :
My name is Nothando Laurel Sibanda. I am a mother of 2 beautiful boys (Aden 7 and Loyiso I currently work and live in Johannesburg, South Africa.
When did you notice your son’s developmental delays?
Aden, my firstborn, is autistic. Before he turned two, I realized that he exhibited some unique behaviors and developmental delays in comparison to his peer group. I assumed it was because he is an only child at home, and so I decided to take him to crèche (daycare/kindergarten) early so he can socialize and acclimate with other children in his age group.
However, as a first first-time mother, I was dependent on Google for every and any slightest thing. As he progressed with his delays my Google searches and mother’s intuition led me to Autism. This was essentially due to his regression. At eight months, he could imitate saying “MAMA,” but at two years old, he no longer was able to do so or attempt to mutter words.
Between his second and third birthday, additional symptoms of autistic behaviors developed and became more prominent. He would flap his hands, spin in circles, headbang, and hyper fixation to puzzles. By the time he officially turned three he was still non-verbal. I knew it was time for us to see a specialist. Our first evaluation was by a neurologist.
What did you know about Autism? Did you feel you were well equipped with the information that you needed and provided?
I only had a general idea of what autism was in theory. However, it wasn’t until his developmental delays did I start to understand and learn the semantics of his behaviors. Prior to his official diagnosis, my primary focus was on the remission of his symptoms. I was essentially looking and pouring all my energy into finding help for my son. In retrospect, I spent a lot of time searching and chasing for a cure instead of researching HOW to be a mother to an Autistic child.
I had seen parents with Autistic children, and I had prayed and hoped never to walk that path. However, deep down as they say a mother’s intuition is always right I knew Aden was autistic. I was not equipped, I was a first-time mother, I was not prepared for his diagnosis and I was just NOT READY for a reality I already suspected.
There is so much that goes on after a diagnosis, financially, emotionally, physically, and psychologically. It never ends. I am still learning, And I am not afraid to say I am still not fully equipped, BUT for my son and family, I take it ONE DAY AT A TIME with a positive outlook.
What do you want people to know about autism and spectrums?
I know it’s cliché and ignorant to assume that when you have seen one person with Autism we assume we have seen the entirety of the spectrum. However we know or should know that Autism has no look; therefore, it is important to be empathetic and patient with everyone you meet in general. We live with many undiagnosed individuals who, some as children were deemed weird, geeky, slow, or dull because of lack of awareness.
What is your son’s superpower?
Aden is a genuinely loving and caring soul. I have realized that he can sense energies and does not like being around places that he feels are negative. He is also incredibly observant, especially in technical areas.
Did his diagnosis have an emotional toll on your mental health? Does it still do?
You can imagine the difficulties of having a child that you have no idea how his future will turn out in all aspects of life. I had already planned on how I wanted to raise my son, the conversations I couldn’t wait to have with him, I had planned on the schools that he was going to attend, the extracurricular activities he would partake in. All those dreams were essentially “canceled”, and I had to reimagine a different life one that I had to adjust to.
I went through all stages of grief. I cannot translate how I felt or how I still feel into words. In as much as I do not want to change my son, I also do not enjoy seeing him experience the difficulties of living with Autism. I am always anxious about how he will cope should I depart this world; I worry about the lack of acceptance in our community. I just worry every day about whether he is ok if he has a headache or not, how he’d communicate with me should something be wrong, whether I’d understand if he was trying to alert me that something in him is not ok.
I have accepted everything about him; every day is just a new day with the hope of improving mainly his communication skills. Sometimes he shows that he is struggling to get a message across, and he starts sobbing. Now that wrecks me emotionally.
Did having a diagnosis give you any relief, or it made you even more fearful?
I cannot call it a relief, but it gave me something to work with. I had to put my supermom gloves on to get to work and face the challenge. I did not have a problem accepting the diagnosis. Intuitively I already knew deep down and for me, it was game on.
The fears came after realizing that as my son continues to get older and cognitively develops, the traits and symptoms develop as well. At one point, his autism was mild and then transitioned to severe. That is where the fears associated with child abuse, homicide, and abduction amplifies. I have to provide full-time care for him, as he cannot communicate anything that may be a danger to him without me being aware of it.
What obstacles did you face, if any, in him receiving treatment during Covid?
The pandemic has changed all our lives and I made sure that he experienced what we all endured. There was a total shutdown therefore, his therapy sessions had to be canceled. Such is life. Virtual sessions require eye contact, and he is not comfortable with that. I did not put him in any bubble to shield him from all this. He had to learn the new world his way, and trust me; he uses sanitizer more than anyone in this house and always makes sure that he always has his mask.
Did you face any cultural stigma after his diagnosis?
Oh yes! If it is not people thinking that it’s witchcraft, then it is some indirectly assuming that it may be due to the sins of his parents or grandparents. I have to educate and advocate for Aden and teach them about Autism, but then again, “normal” humans have the privilege to decide if they want to learn from you or be stuck in their thoughts and ways.
What do you feel would have made a difference in your journey at the beginning vs. now?
After the diagnosis, I feel like I overwhelmed him with therapy sessions. I remember he used to see four different faces every week, each with another task for him. At that time, I would go anywhere I was referred to due to my lack of knowledge about the condition. Then I had to pause and reassess, realized how this was affecting me financially, plus I was spending my lunch breaks at therapy rooms which also took a toll on my own physical wellbeing. I then decided on shortening therapy sessions and realized that they must be reasonably paced treatment plans to minimize sensory overload.
After much deliberation, I decided to equip myself with knowledge on being an Autism superhero mom. I spend more time with him therefore, I have to understand him more than anybody else. I have to teach him the pragmatics that would be of use to him in the society and world we live in.
If I had a broad understanding of what Autism is/ was before it affected me directly, I would have handled things differently.
How do you take care of yourself so that you can take care of your family?
I used to take breaks by traveling whenever I got an opportunity before Loyiso was born. Currently, I just take 2 hours a fortnight (two weeks) to go for a Mani and Pedi. Trust me, it’s a short time, but I recharge a little.
Any advice you would give your younger and older self?
To my younger self, embracing diversity is important in life, but it has become a prerequisite for optimal growth and living.
To my older self, know what you can and cannot control. For everything that you cannot control, never let it break you but take it to the Lord and always pray for a positive reaction.
Any resources you would like to share with mothers who may be struggling or need additional information?
The research on Autism is still developing, and I’d like all parents to partake in research works that are developing. In as much as we accept the condition, we need our children to live optimal lives. I would never wish any parent or child to go through what we go through, and if a cause can be identified, at least the increasing number of children affected by Autism will decrease. Bear in mind that 41% of people with Autism are non-verbal. That calls out for more awareness and acceptance, but above all, resources are needed to aid extensive research.
I am still struggling as well, so this is a message to myself also – As mothers/parents/caregivers, it is crucial to seek therapy and take care of our mental wellbeing. We need help; we need someone who can listen to us without judging us, we need someone who will understand that we were not blessed with children with Autism because we can handle it. It is difficult.
Please share the proudest memory/moment you have shared with your son or overall family
Aden makes us proud in so many ways. A new word from him or an addition to a phrase to us is like Christmas! Every time he tries a new food, I feel like writing about it on my status update! It is those little things that are taken for granted that fill me up with joy and gratitude. We celebrate every little step he takes.
What would you like your son to know about you as he gets older?
I don’t know how many times I tell him that I love him in a day. I’m just hoping I show it enough. As he gets older, I want him to understand that he is my son and that I so dearly love him. He is my source of joy. I will forever live my life to care for and for his best needs.
What are you the proudest about yourself?
I have raised a happy boy for over seven years now despite all these challenges that I have faced. That on its own accord gives me the greatest sense of pride. I’d say this adventure has made me realize the unconditional love I exude, the power in believing in God, and I can say that I am also proud of myself because I have learned to allow myself to break down but never stay down. I am my source of comfort and strength, and I have done so well in making sure that I create an environment that my son is comfortable in.