The beautiful story of Caro & Evie

When Caro was pregnant with her daughter Evie, she imagined, like most of us do, a fairly typical trajectory—sleep woes, toddler tantrums, playdates, netball matches, mainstream schools.

But when Evie was 4 she enrolled in a mainstream school and within days it was clear it wasn’t the right fit for her. Spirited and life-loving, Evie, who has severe ADHD, is one of the kindest, most empathetic 7 year olds you’ll meet. But parenting a ‘neurodivergent’ child in a world that caters to ‘neurotypical’ children has been a journey of highs and lows for her parents.

So many areas are implicated in an ADHD brain—those that affect emotions, analysis and judgement, the parts which relay and interrupt information, and, crucially, those responsible for ‘feel good’ feelings and self-esteem.

Basically, messages in the brain are not reaching their destination before being inundated with the next wave of information. Being bombarded in this way makes it hard for kids to learn impulse control, to be alert, remember things, organise their thoughts, or coordinate their bodies and movements.

Many kids like Evie go on to do remarkable things as they’re able to come at things from different angles (Albert Einstein had both ADHD and Asperger’s Syndrome). Our modern world needs these out-the-box creative souls who’re not bound by conventional thinking. Greta Thunberg comes to mind. She believes her Asperger’s has helped her focus on her environmental crusade.

Still, as Caro’s beautiful insights reveal, parenting neurodiverse kids can be an exhausting and humbling journey. Here, in her words, is some of what she’s learnt:

‘When you tell people your child is special needs, they want a label or an explanation of exactly what is wrong with her, especially when, to the untrained eye, she appears to be a regular little girl. But ADHD (Attention Deficit Hyperactivity Distorder), like Autism, occurs along a spectrum, and each case is unique. Plus it’s so layered and seldom occurs in isolation. There is a lot of co-morbidity—meaning a child with ADHD will likely also have anxiety, lack of self-esteem, low muscle tone and a host of other issues.

There’s such a huge sense of guilt when you have a special needs child. You question if it was something you did. Was it because you fed them colourants or gave them too much sugar, or is it because you didn’t breastfeed? But the guilt doesn’t achieve anything.

Things like gluten, food colourants and sugar don’t cause ADHD. It can be caused by multiple things. It’s partly genetic (usually inherited from the father’s side, or from a tapestry of genes from past generations). Environmental factors can play a part too (for example, if there’s severe trauma in utero).

There’s a tsunami of kids being diagnosed with ADHD and you hear parents say that teachers are drugging kids because they want to control their class. I used to be the judgiest judge about drugging your children, but the medication does help.

Ironically, Ritalin (or any cousin of it such as Concerta or Nucon) are all stimulants. This seems so ironic considering a lot of ADHD children seem to need anything other than a stimulant! Ritalin helps messages in the brain to be received more clearly and without as much interference or noise.

ADHD has been around for a very long time. I remember a teacher who used to tie children who couldn’t sit still to their chairs, or tape their mouths shut when they talked too much. And children who really battled were put into the ‘slow class’ or removed completely and put into severely special needs schools/environments.

One of the hardest things about having a very regular looking and seeming child is that people think the reason for her poor social skills such as nagging or clumsiness is merely a lack of discipline. The reality is, she really can’t help it most of the time and, when you parent a child with these challenges you know all too well how damaging certain lines of discipline can be. They have more damaging effects on their self-esteem than actually achieving any ‘good behaviour’.

In this day and age, with the helicopter parent stigma, it’s all too easy to be judged as an indulgent parent who gives in to her child. There’ve been times when I’ve succumbed to the fear of being judged in social settings and have actually shouted at or reprimanded my daughter for things I knew she did out of a lack of control.

Later in the day she might come to me, sobbing, and apologise for being a ‘dumb child’. This is heart-breaking. Not only is it a label I have never uttered but it’s so far from the truth, and reveals to me the depth of shame and difficulty she experiences when she knows things have happened that she didn’t want to happen. It makes me feel extremely ashamed as I know better, and I have to be her number one champion, her main support.

So it can be a lonely journey. It’s a shame thing, you’re embarrassed that your child is behaving differently and because she is not overtly any different, like someone with Downs Syndrome, people point and stare.

It is of course the biggest irony that having spent most of my life desperately trying to fly under the radar as far out of any public scrutiny as possible, I am raising a child who has forced me into the limelight, and not always in a very easy way. I always wanted to fit in come hell or high water, so having Evie happened for a reason.

When she was younger, I used to be hung up on mainstream schools, but not anymore. Only 8% of kids learn the way they teach in mainstream schools. Education is such a dinosaur, and these kids are teaching us that the system needs to change. The entire world has changed, so why do we feel bad when our children can’t function in ‘normal’ schools.

If she goes to a mainstream school, she goes. If she doesn’t, she doesn’t. We all just want to raise a kid who is kind, caring and empathetic. That’s the ultimate goal.

As mothers we come under such a magnifying glass. If you’re sensitive to judgement, it’s a minefield out there.

So what would’ve made the journey easier? Support, support, support.

It’s easy to isolate yourself because it’s an ever-changing journey. We’ve found a bit of a community with families in the same situation. Still, it’s hard because Evie is highly social and she craves interaction but she doesn’t have many friends. The classes at her special needs school are so small and each kid has their own issues. Other kids who’re not at school with her have their own circle of friends and it can be hard to break into that. It’s only natural to take the path of least resistance, to gravitate towards people who are in a similar stage to you, so I understand that.

And I can’t expect friends to help as we don’t parent in a village anymore, and everybody is so busy themselves.

Because things are always changing there are always decisions to make. Like recently I’ve been looking for a nanny. It has to be someone very specific who can relate to Evie and be patient and compassionate and not end up reprimanding and shaming her.

It’s such an all-consuming job. There are the pressures of the modern world generally but, a child like Evie requires additional support and has endless other appointments to add to the list of things—physio, speech, eye, OT (and with this of course goes the mounting cost of things).

You can never fully relax or take your foot off the accelerator. You have to constantly ensure your child is ok and receiving the best support for her growth and development.

So there’s often not much time to engage with her on the level where we can just be. Sometimes, if there are no scheduled appointments, I can get anxious, as without structure she can be demanding and exhausting, and it’s always very messy. Because of her spatial awareness she breaks things and knocks things over. Time with her can be very inconsistent, and you never know how it’s going to go.

Evie presented with severe Hyperactivity from an early age, so we’ve been on this journey a long time now. Some children who present more of the Attention Deficit side can often go unnoticed for years.

Over the years, you find your team and your support crew who genuinely care for and want to help your child. Ultimately, just like everyone else, you want your child to become a fully functioning member of society who believes in herself, has friends and a purpose they can believe in.

One of the big lessons for me is that a mother always knows. And when you know something, don’t be ashamed to talk about it. Don’t doubt yourself, or spend thousands of Rands getting assessments. It just delays the inevitable. Go with your gut and speak to people you know who are on the journey. Friends and word of mouth were actually more helpful than trawling through lists of potential professionals who could help.

I sometimes see kids who are struggling, and I can see the parents don’t want to deal with it. There’s no point denying it, because in talking about it, you free yourself. There is no shame in being a parent raising a child with struggles. All parents go through phases of angst and fear. For us, it’s these formative years. For someone else it might be a child with a drug problem later on in life.

I believe life is a journey of growth and evolvement and rather than focus on the ‘shoulds’ I’ve learnt to embrace the now and the heartache, and to continually remind myself that we will always get through whatever we are going through. There is always learning and, somewhere in it all, joy and love. And aside from all the challenges and heartache, our child has brought us more joy, delight, humour and inspiration than could ever be imagined. She is so bright, perceptive, empathetic and she has a heart filled with pure kindness, determination and love.’

❤

Kintsugi

Kintsugi

‘You’re a writer, you need a furrowed brow.’

A friend said this to me after I told her about the beauty therapist who suggested I soften my frown lines with botox. I told the therapist (all 23 years of her) that if I wasn’t so anxious about injecting something (what, exactly?) between my eyes — perhaps.

As an interim arrangement, to stop the furrows getting deeper, she suggested I start using my eyes to express myself, not my whole face.

‘If you want to smile, smile with your eyes.’

She showed me how, and she was really good at it.

(By corollary, I should frown with my eyes, not my forehead).

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On raising heathens

On raising heathens

Lately, I’ve been fielding lots of questions about religion from my kids; I’ve bumbled them all. My 4 year old, from the back seat of the car on the school run ‘But why did those people want to kill Jesus?’

And my 7 year old, who’s been combing through a Children’s Bible he got for his first birthday. ‘Jesus couldn’t really walk on water, could he?’ Like his Dad (and unlike me), he is ruled by logic. If it doesn’t make sense, it just doesn’t hold up. Then, after a recent school outing to a Mosque, ‘Am I a Christian or a Muslim?’

We could’ve sent our boys to the secular school across the road (boy, would that have been easier) but instead we schlepp across town so they can go to a traditional school with sound Christian values. I’m not a Christian, and my husband, like most of the people I know, is what I’d call a cultural Christian — born into a Christian family but not necessarily a Christian at heart, or a practicing Christian.

I did go to a Convent primary school and a Christian high school. To this day hymns (particularly those solemn Catholic ones) move me to tears, and I love going to Church. I think Jesus’s message was beautiful, but I’m also drawn to Buddhism. Without knowing why, I’ve always had a statue of the Buddha in my bedroom; it’s only recently, since I’ve delved deeper into Buddhist doctrine, that I understand why. For me, it speaks directly to the pitfalls of our frenzied, modern world, and gives practical tools for finding calm in the storm. The Baha’i Faith, my mom’s religion, has some wonderful beliefs too, like equality of the sexes,  harmony of science and religion, the unity of humankind.

It’s easy to be cynical about organised religion — after all, wars have been fought in its name, and some religious institutions are corrupt and rife with hypocrisy. But religion (or is it faith, I tend to confound the two) is a beautiful way to make sense of an uncertain world. Often it provides solace where nothing else can.  If, in your heart you believe in a particular faith and all its teachings, how comforting that must be.

Beyond being spiritual creatures, humans crave a sense of belonging. Religion, with it’s associated rituals and cultural practices, provides just that. Christmas is a time of family and togetherness, whether you’re thinking about those pressies under the tree or reflecting on the birth of Jesus. Likewise with Easter — for many, it’s as much about holidays and gorging on chocolate and Easter egg hunts than it is about remembering the death of Christ. It can be a sacred time, or one devoid of any religious beliefs; either way, it’s a time for the tribe to gather, and it gives you a sense of your place in the world.

But, back to those questions. What on earth do you teach a curious young soul about religion, if you don’t have one yourself? If, like many people who don’t belong to an organised religion like to say —  you’re ‘spiritual but not religious.’ Kids need guidance, some kind of compass with which to navigate the world, and they like certainty. But maybe it’s okay for them to know that there aren’t any solid answers; religion is a deeply personal journey, one they’ll have to take themselves. Their faith, if they have one, may be continually tested, but that’s part of the unpredictability and beauty of the human experience.

I told my 7 year old he doesn’t have to decide now; there are many religions in the world, and they all teach us important things. I wish I’d have remembered my favourite quote about religion, which beautifully encapsulates what I’d like to teach my kids, whether or not they’re baptised (they’re not), or we go to Church (we don’t):

My religion is very simple. My religion is kindness.
-Dalai Lama