How My Son’s Disability Has Made Me Re-evaluate the Meaning of Life

When your child has special needs, it causes you to re evaluate what makes a life important. Will their life have meaning? This is my attempt to answer some of these big questions.

I have always thought there is a point past which life ceases to have meaning. And most of it is connected with how well my mind can function. I have lately realised that until my son was born, my entire identity was tied up with a view of myself as an intelligent being that can communicate my needs and understands the response of other people. If my brain every stopped working well, I think, I would have preferred my family to euthanize me.

In neurosurgery, decisions like this need to be made many times a day. A book I am reading at the moment, ‘When Breath Becomes Air’ by Paul Kalanithi, grapples with these issues. It talks about the trade-offs that victims of traumatic accidents need to make all the time, with the help of their surgeons and families.

The author was, until his recent death, a promising neurosurgeon. In his book he chronicles his journey both as a professional and later, as a patient with a terminal diagnosis of his own.

He says that the language centre is the one that is the most precious to a surgeon. Damage to Broca’s area will result in an inability to speak or write – a patient may only be able to say nonsense words, or list random numbers. But not speak or write meaningfully. Damage to Wernicke’s area results in an inability to understand language. If a patient suffers from a traumatizing accident, or has cancer, potential damage to either of these areas may cause a surgeon to hesitate – is this life worth saving? It is unlikely that the patient themselves, if you could have asked them before the accident, would say that they wanted to live a life without language.

The Lack of Language

Until recently I would have agreed without hesitation. Even if I saw a child with a head trauma or a serious intellectual disability that seemed perfectly happy, I would still think their life wasn’t worth living.

My son was diagnosed with autism a year ago. He is non-verbal, and understands very little of language. If I had to guess how many words he definitely understood, I would say under 50. We can’t be sure of anything yet, as he is just under three. Despite his 30 hours per week of therapy, he has not progressed much in things like looking at books or communicating with pictures. His ADHD and probable intellectual disability have made these things especially difficult to him – more so that for many other children with autism.

The autism by itself is enough to make many parents re-evaluate their priorities in life. The intellectual disability has shattered all of my conceptions completely.

Why Me?

I know it will get better for him. It is likely that with time he will understand more words, and he will be able to talk. And it is likely he will be able to read and write to some extent. But he is likely to have difficulties with language, both expressive and receptive, for the rest of his life. I remember thinking how ironic it was, when he was tested, that my language skills are in the top 0.3% and his were in the bottom 0.3%. Why me? I thought, at the time. The answer of course is, why not me?

I have since accepted that the potential intellectual disability will affect his schooling options, and his employment in the future. I have modified my expectations of my future family life. And I’m still not sure if that is a victory or a defeat. But I am sure that his life will be a happy one, with a purpose, with valuable relationships, and with a lot of hugs.

The amazing human mind is bigger than its IQ

Never, even after being up with him for three hours every night, have I looked at him and thought it would be better if he did not exist. He is an incredibly vivacious, charming, and happy child. Not only is he happy in himself, he spreads happiness and love to everyone around him. I only need to be near him for five minutes, to feel the glow of his smile, and to understand that at least in this one area I have been wrong my whole life (and probably many more).

The mistake that I have made is to judge his life from my vantage point. It is the same mistake that the neurosurgeons in Kalanthi’s book make. They look at the future life of the patient, and they think ‘I wouldn’t want to live that life. Therefore, it isn’t worth living.’

But the human brain is amazingly resilient. Six months after a traumatizing accident, and six months after a lottery win, almost everyone that isn’t in debilitating pain goes back to the happiness equilibrium they were at before these events. We adapt. We change.

Communication isn’t just about language

If we can’t speak anymore, we learn to communicate in other ways. 90% of human communication is non-verbal, so there are plenty of options.

My son for example gets his needs met quite easily. He takes our hand, and leads us to the microwave for food, or to the back door if he wants to run around. He gets into the pram if he wants to go to the park, or ‘asks’ us to change his cartoon if he is bored. And after a year’s worth of therapy, he can also now roughly point in the direction that he wants us to take him, or use pictures to tell us what he wants. His lack of language has made him frustrated at times, and me even more often, but there are many ways around it.

I know there are many children with disabilities, including autism, that spend their lives in great pain. Maybe their parents may sometimes think, justifiably, that their lives are not worth the pain they go through. But I have now met many parents of children with disabilities, and with the right early intervention, cases like this are few and far between.

What is valuable in a person

The problem is that all the people making the big decisions – the doctors, the lawyers, and the philosophers – only value themselves because of their intellect. It is their most prized possession and the meaning they place on their lives is directly proportional to it. If they didn’t value it they wouldn’t be who they are.

My son has taught me that a person’s value is not proportional to their IQ. Or how many degrees they have. People are valuable in and of themselves. If it this value is dependent on anything it is only how much joy this person brings to those around them.

A disability, whether your own or that of someone you love, isn’t life-altering. It’s life shattering. We all live with limited resources and something like this can stretch them to the limit. But a society is defined by its ability to care for its young, its elderly, and those with illnesses or disabilities. And we must always remember that out of the shattered pieces of your old life it is possible to fashion something beautiful and truly special. Like my son.

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