A Father’s Story: Living With Eliot

Caring For You

Living with Eliot is a column in Carers NZ’s Family Care magazine, written by Eliot’s Dad, author and commentator David Cohen. In it he explores issues of interest to parents of children who have special needs.

It’s a graceful lull of a Sunday afternoon here in Wellington, and I'm going to start the first of these brief accounts of a carer’s life before the business week proper kicks in tomorrow.

That's because my working week generally has almost as much to do with autism as business, sometimes to the point where the two blur together in a slightly weird shade of grey, more often than not at the expense of both.

Thanks to a variety of respite arrangements, things are (and these things are relative) as mellow as they can possibly get on Sundays, give or take the fact that my shaving cream appears to have vanished. Again.

My son Eliot, who is autistic, rather likes shaving cream. The fact that it’s in a squeezable tube and very foamy to the touch are but two of its attractions.

It also tastes rather nice.

There’s almost nothing Eliot’s father would like more than to be able to leave his various toothpastes, shampoos and creams on an accessible shelf in the bathroom.

But to do that invites an impromptu abstract art display with the content or else wholesale consumption of the same.

Something in the sensory confusion of Eliot’s condition not only makes this behaviour irresistible but positively consoling, the equivalent, I guess, of me enjoying a morning latté: a momentary mitigation of life’s harsh lottery.

Routines

No doubt, having an autistic child (and here I am talking about what’s known as core autism, without spoken language and replete with the bizarre behaviours and all the sonic outbursts that define the condition at this farflung end of the spectrum) rates a little patience.

It’s also a constant reminder of a truth about those among us who live with those who have special needs.

They are like everyone else, only more so, in part because any inability to speak and behave ‘normally’ at times is in no way related to the unaffected ability they share with the rest of us to think and feel.

The condition of autism can therefore be deeply challenging ... for the rest of us.

He (and it usually is a he) needs to be ushered rather gingerly into each new day, toileted, bathed, fed, walked, transported and generally parented with the attention to detail one usually reserves for the very young.

Autism Research

Nine years ago, when Eliot was first diagnosed with the condition aged three, I marshalled whatever journalistic skills I had acquired over a knockabout career in the news gathering business to help me understand what was happening in my son’s world. This resulted in a book about autism in the wider world: in England, Israel, Korea, the United States, and here in New Zealand.

I started out with the hope of finding evidence of a tentative cure. As Leo Kanner discovered when he went back to check on the 11 kids he studied during a five year period from 1938 to

1943, the ground-breaking research in which autism was first described, no one ‘recovers’ from autism any more than they might from having blue eyes.

I also discovered, like Kanner, that’s there’s no damn good reason why they should.

So the condition remains.

But the young child, nowadays approaching adolescence at full throttle, has all but melted away.

In a few months my autistic kid will be an autistic teen. This coming year will be Eliot’s first at a high school, and it will be interesting, and possibly a bit frightening, to see what the provision of college age education is like in our country.

Living in the Moment

Other things have happened during this period, too. In the time since I wrote about the initial experience, I’ve moved that much closer to what I think of as the 30 most terrifying years of all. That’s to say, the average amount of years when one is dead and the offspring lives on. What will happen then? Who will look after things and who will Eliot get to hang out with? (Like many intellectually impaired individuals, he loves good company.) I wish I knew.

Luckily, of course, I'm still around to ask the questions, and if there’s one thing autism teaches those it affects it’s the value of living in the moment.

Tradeoffs

On the other hand, unlike most other parents with a kid on the cusp of their teens, there is another decade that I don’t need to worry about: the one immediately ahead.

The predictability of autism has its parental advantages. I know that Eliot will never develop a drinking problem. Nor will he do drugs, get addicted to bling, break the law, fall in with jackasses, join some whacked-out cult, or get some hapless girl pregnant. And what ordinary person wouldn’t envy Eliot for having a life to look forward to in which he’ll never lose a wink of sleep over money concerns?

As tradeoffs go, perhaps this one isn’t so bad for a parent after all, and certainly not one to fret too much about on a glorious afternoon like this.

Now, if I could only find my missing shaving cream.

Listen to an interview with David

APerfectWorldAlso read David’s book A Perfect World, about his quest to understand autism, and how different countries support those with the condition and their families. The book is available from libraries, at bookstores and as an e-book at www.amazon.com You can also find copies on TradeMe.