There’s an old Chinese expression which translates: “Raise a child for 100 years and worry about him for 99” (although 101 might be more accurate). We have our own: “You’re only as happy as your unhappiest child.”

Many parents would identify with both. From the moment our children are born, indeed, well before that, protecting them becomes second nature and a full-time job. We spend the first 20 or so years of our children’s lives striving to give them life skills and resources for happy and successful adulthood. We make life as painless and comfortable as possible, and if our child is rejected or bullied, or left out of a school party or game, our instinct is to ‘fix it’ and kiss it better. 

Now try to imagine, if you can, what it must be like for the parents of a child born with a disability whose fears are real and legitimate.  Overnight, their entire world is upended as they struggle to come to terms with what has happened. Sometimes, a full diagnosis of the disability will take years. 

Yet, life will still go on, the road ahead gruelling and often lonely – an uphill struggle with no convenient road map. Affluence perhaps might iron out some of the slopes but it’s still no comfort or consolation. Of course, straitened financial circumstances will make a challenging situation well-nigh impossible.

I struggled to write this piece and have been toying with it for months. I was all fits and starts. How can you write, with any authority or conviction, about something you have never experienced? If something as banal as my son not being invited to a party at the age of seven once caused me unimaginable grief, how could I possibly know what real pain and suffering looked like?

And, yet, perhaps it’s precisely this experience of the mundane challenges of parenting that makes me able to empathise with those facing the very special ones. I have friends and family in this position. And my work frequently puts me in touch with parents whose children present a whole range of disabilities and handicaps.

These people have spent much of their adult lives caring for disabled children – at huge personal cost. The personal sacrifice is incalculable. It is, therefore, no surprise that, after meeting them, I feel helpless and sad. And angry and frustrated too. It’s certainly the hardest part of my working week. Yet, at the same time, I emerge strangely resolute, committed to making a difference.

From the moment our children are born, indeed, well before that, protecting them becomes second nature and a full-time job

Over the New Year, a friend of mine with an autistic Down syndrome son said something that made perfect sense and also broke my heart. Her biggest wish, she said, was for her son to make at least one good friend: someone with whom he might, one day, share a beer and shoot the breeze. This is something you’ll encounter among all parents of disabled children; their hopes and dreams are really no different to ours but, of course, far less achievable. Who would not want a child – any child – to be happy, safe and, above all, included?

We’re very good at paying lip service to concepts like ‘inclusion’ and ‘world peace’. But it’s only when such things press close that we take proper notice. No surprises, then, that we approach education complacently and think that simply placing a child in a school constitutes ‘inclusion’. It does not.

The fact remains that a child with special needs requires, from day one, special support and special services. That’s because all children have the right to realise their potential through education, be they verbal, non-verbal, neurotypical or neurodivergent. Inclusion, therefore, means catering for every single student, irrespective of challenging behaviour. This, in turn, requires the training, recruitment – and retention – of fully qualified staff.

Imagine, therefore, not being able to send your child to school because you fear for his health and well-being, or because the school doesn’t want him on account of his ‘challenging behaviour’. My contention, however, is that such behaviour only becomes challenging when the school itself cannot implement inclusion. Why should children suffer because a school lacks properly trained staff and adequate resources? 

I’m loath to wade waist-deep into a subject as delicate and challenging as this but, from where I am sitting, one of the biggest problems with this sector of education is a marked lack of awareness at all levels.

Drug rehabilitation, with its various programmes, residential centres, therapeutic communities and other initiatives, appears to attract far more public attention and charitable and governmental support. I’m not saying that this isn’t brilliant but I am suggesting that disability misses out, for all the buzz of goodwill surrounding it. We’ve all heard of Caritas but it was only very recently that I discovered that disability services fall under the remit of Aġenzija Sapport. Yet, after googling the website several times, I emerged none the wiser. It’s complicated. 

All parents worry about what will happen to their children after they are gone. In the case of parents of disabled children, this is magnified and akin to panic. If I had one wish, it would be for the government, stakeholders, NGOs and parents to combine resources and invest in a state-of-the-art, ground-breaking centre for the disabled. 

Imagine a community like Ta’ Ċenċ, with spacious grounds and properly trained staff, where children and young people would receive an education dedicated to their needs, and thrive: a place of laughter and joy, as unlike an institution as possible, replete with swimming, horse riding, painting and sports. A place too that whole families might enjoy for short residential breaks.

And if done properly, this could be yet another ‘niche market’. The revenue generated could certainly help the government fund a service for Maltese children free at the point of delivery. This would be not dissimilar from the University of Malta with its foreign intake and stipends for local students.

But, in the here and now, the important thing is that special education receives special resources – and dedicated special people and specialists.