ZONGILE NHLAPO: On navigating special needs child conversations – what awareness sounds like

Recently, a colleague innocently remarked how easier it must be in our household now that our son is 6 years old.

I think she was imagining what I also picture as a normal scenario in a home with a similarly aged boy.

Only it’s not. Our son, Mnqobi, is autistic and minimally verbal.

I sat with my colleague’s words for a while because, well, I didn’t want to lie in my response, and risk having a similar sentiment reiterated while I know very well it’s not true.

In hindsight, I also think I didn’t want to pass up a potential opportunity to create a little awareness, especially seeing as I spend so much time at work – a space where such conversations are bound to regularly come up.

A DIFFERENT KIND OF NORMAL

Generally, many children with autism have a developmental delay, so they may learn new skills slower than their peers and may not hit certain milestones as timeously as other children.

They may also have challenges with social interaction, and it’s not uncommon that they exhibit restricted and repetitive behaviour. This also applies to Mnqobi.

Being minimally verbal means he currently uses only a few words, which are combined with gestures to communicate.

ALSO READ: 

• Motherhood isn't defined by my 'non-verbal' son calling me mom

You see, under normal circumstances, a few weeks ago we would’ve been in the cohort of parents who were anxiously waiting for Grade 1 placement letters for 2025. That’s not the case.

To paint a vivid picture, this is what our normal looks like:

- Rigorous therapy schedule. He’s in three essential therapies. Wears glasses. Toe-walks. So, we’re in a continuous cycle of meetings – parent meetings, therapy meetings, intermittent specialist meetings.

- Meltdowns. When there’s miscommunication or we deviate from pattern, or he’s overstimulated, we deal with meltdowns that can last up to 30 minutes that nothing seems to console.

- Hypervigilance. His sense of danger can appear slightly diminished. For example, we had to literally seal some windows at our home because he had developed the habit of wanting to Superman himself from the highest window.

- Patterns. A few times we’ve had to go back and repeat step by step what I now call the "car pattern" – which includes putting on the seatbelt, turning on the ignition, reversing and parking again. We miss one step and there’s absolute pandemonium.

- Pre-scoping social spaces. Trips to the local grocery store can end in a meltdown because of overstimulation or other sensory processing challenges that we may sometimes learn of, on the spot. So, we are master pre-scopers now.

- Irregular sleeping patterns. Our son can sleep for four hours and call it a night. So, we’ve been known to be up from midnight until the sun rises, with no sight of him slowing down.

- Potty training. Yes, at 6 years old, we’re still at it - the whole community of family, teachers and therapists. It's probably been one of the hardest things to teach, deal with, process, or even talk about.

- And no, there’s no swimming, riding a bicycle or playing any sport. Well, not as yet. And this is compounded by all the above.

THE CRUCIAL IMPORTANCE OF AWARENESS

Certainly, all children are hard to raise. And I speak as the mother of another child, a 3-year-old daughter who is neuro-typical or otherwise developing normally.

Yet I can without any hesitation say that Mnqobi’s sister’s first three years of life have been markedly different from Mnqobi’s. And yes, dare I say, much easier.

And no one here is faulting parents who speak around us from their default positions. Nor do I want to risk this piece being seen as a ‘Oh, we must tiptoe around parents with special needs kids'. Absolutely not.

However, with better awareness, we can conversate a lot more cautiously, and even empathetically.

How do we achieve this awareness?

To me, the first step is simply asking questions, as many as you can, as many times as you need to.

Some of the best and simplest questions I’ve ever been asked include:

• "When did you first notice differences in his development?"
• "What’s the latest word he’s learnt?"
• "Does his school have grades?"
• "Will he respond if I give him a hug?"
• "I’d like to invite him to my kid’s birthday party. What does he eat?" | Why? Because many people on the autism spectrum struggle with sensory issues surrounding food - the textures, smells, and tastes of certain foods.
• "How does he get along with his sister?" | Here, I was able to explain to a friend how kids wonderfully communicate through play and fight just like other siblings, whether fully verbal or not.
• "Can I do anything to help?" | Study after study speaks to the chronic stress of parents with special needs children and the grief for "losing the hoped-for stage of development"; and so sometimes, this question, asked by the right person at the right time can help.

BEST NOT TO SAY

And while we’re at it, there are some comments that may be better left unsaid.

Now, I do not believe that some of them come from a malicious place. Only as people, it’s not unusual that when we feel uncomfortable, we say something to try to bridge the discomfort, and then it just doesn’t land well.

A few that have rubbed me up the wrong way include:

• "God gives his toughest battles to his toughest soldiers."
• "He doesn’t look autistic."
• "I could just tell something was wrong with him."
• "Did you do something while pregnant that caused his autism?"
• "My neighbour’s sister’s child also had autism and has now outgrown it."

Perhaps it’s also important at this point to note that, every child with, in our case, autism is different. Autism is a spectrum disorder, and it affects people in different ways and to varying degrees. There's no one-size-fits-all explanation for something that presents varyingly from one person to the next.

While at it, another cautionary word I can throw in is, even as some of us as parents welcome questions, as best as you can please conduct a temperature check, in case you’re seeking answers from one who is just not ready to talk about it.

Since that conversation with my colleague, she has so kindly led with questions, which I’ve tried my best to answer.

And I’m so glad I didn’t pass up that opportunity to gently challenge that innocent "must be easier" assumption, because beyond conversating informatively about special needs children, crucially, and this is my sincere hope - is that the awareness works in parallel with challenging stereotypes and misconceptions.

As the more aware we all are, the better we can collectively fight shame, exclusion, and othering.

Also, because our special needs children are neither a secret nor creatures deserving to be hidden.

They are ours in all ways neuro-typical children are, and as fully deserving to rightfully co-exist in this unjust world.