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If you’ve ever loved someone with additional needs, I encourage you to read this story

Nikki Stevenson

Nikki Stevenson

Nikki is a parenting writer and a mom to three wild boys who keep her on her toes (and occasionally make her question her sanity). With over 15 years of experience in the parenting industry, she has more tips and tricks than Mary Poppins on speed dial. When she's not typing away at her keyboard, you can find her sipping on coffee, hiding in the bathroom for five minutes of...
Created on Oct 30, 2023 · 6 mins read

I was recently sitting at a hairdresser (who I didn’t know) when it came up that my middle son had additional needs. His immediate reaction was, “I don’t know how you do it; you are so brave”. While I realised his comment was well intended, it did give me pause.

Why would someone view me as brave for being a parent to a child with additional needs? Having three boys under the age of 13 – sure, that’s brave. Taking them all to the shops for a grocery run when I don’t have to – superhuman. A beach trip with myself and just the three of them – now that’s just bordering on insanity.

But parenting a child who needs an extra helping hand – well, that’s my job.

My 9-year-old son has been diagnosed with a handful of things, from global development delay and dyspraxia to a speech impediment, low muscle tone and dyslexia. Our journey started, unknowingly, when he was an infant and had terrible reflux for over a year (this was the low muscle tone at work – which was diagnosed as reflux). It then transgressed into severely underdeveloped speech progression from around three years of age.

While other children were speaking in full sentences and reciting nursery rhymes, he was – very adorably – only saying the word ‘Batman’ (which was his obsession). As time moved on, the more we realised that he was falling behind the developmental curve of his peers in a very obvious way. At four, teachers red-flagged all sorts of things, and he was in speech and occupational therapy.

At this stage, there was no diagnosis as such. His older brother had to go for occupational therapy for fine motor skills for a few months when he was younger, and like him, we naively chalked it up to a temporary delay that would come right with enough intervention. It didn’t, and it still hasn’t.

The year before his formal schooling started, the doctors and teachers recommended that he start attending a remedial school that caters for his needs. Although not verbose by any stretch of the imagination, our child always had a belly laugh that could be heard from far away and a smile that made others smile right along with him. But now, he had withdrawn into himself. He was quiet, sad and fearful. He had reached an age where he realised that there were things his peers could do that he couldn’t, and he lost all sense of confidence that a 5-year-old should naturally have in spades.

This was the first step in acceptance for my husband and I. We realised that keeping him in a ‘mainstream’ schooling environment to satisfy our personal hope that this was just a phase was doing damage. That the sooner we came to terms with the fact that he needed more assistance and that he learned and developed differently from those around him, the sooner he could accept himself.

That was a life-changing moment for him. He started at a school where he was not the odd one out, where everyone took breaks to go to therapy, and struggling and overcoming those struggles was celebrated in a big way, no matter how small the victory. In a matter of weeks, we could hear the laughter, see the smiles and watch the confidence seep back in. It felt like our first win on this journey of ours.

The assessments and testing really started to kick in at that stage as he entered his first year of big school. So many doctors, so many forms. For any new parent reading this – take note of every milestone your baby goes through (the age when they roll over for the first time, crawl, first word, etc.) – there will be a form in the future that asks for this. And I am fairly sure I wasn’t the only person feeling like a bad parent when I couldn’t remember ALL the details. Or maybe mixed them up with his two brothers. This should be in parenting books, is all I’m saying.

From neurologists and educational psychologists to developmental specialists and pediatric orthopaedic surgeons – it felt like we saw them all (I am forever grateful that we didn’t have to REALLY see them all). I would say the same thing to all of them, “It’s not that I want something to be wrong – I obviously don’t. But I really do wish we could get an answer. A diagnosis. A name to the things that are causing him to struggle. Something I can Google. I am a great Googler.” And that was half of the problem; for the longest time, the only result we received was that he was behind with his development – no specific rhyme or reason.

This may sound crazy – but now that we knew he needed help and was struggling, I wanted a label. Something I could research and find alternative natural remedies for (fingers crossed). But mostly, I think I needed a way to control a situation that seemed beyond my control entirely.

It was only last year, when he turned 9, did we get his various diagnoses – the ‘D-list’ above. I went through the report and spoke to the therapist while jotting down notes to refer back to after. And then I sat down and cried. That list meant a lot of things to me, but mainly to the hardship he will have to endure as he gets older. He may never be able to read or write proficiently, his speech may always be affected, and mainstream school may be out of his reach. Our traditional education system was not built for my son or those like him, and he will have to battle through that.

But halfway through my crying fit, something hit me. I was crying for the son and future son society expected – that a past me expected. But if I looked at my son exactly as he was, there was nothing for me to cry about. Not one single tear.

Because if anyone is brave in this scenario, it’s not my husband or me; it’s him. Through the testing, questions and changes – he has faced them all with the resilience of someone double his age. He is well-liked. He has a sense of humour that makes his teachers and therapists laugh on the daily. His reasoning scores are through the roof because he has had to find ways to think outside of the box his entire life. Which means his thoughts are unique, and brilliant. He is one of the most empathetic children I have ever come across, having grown up surrounded by children with needs greater than his. He loves animals – and more telling – animals love him. No matter how hard it is for him to sit through a school day, he does it without complaint. He is the most hardworking child I know.

And there I sat, after years of searching for answers, diagnoses and labels, to realise that when it comes to my son – none of that matters at all. My job is done as long as he is exactly as he is.

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