Battle-weary heroes trying to keep the Batmobile

Fiftysomething

Fri, Jul 5, 2013, 01:00

President Michael D Higgins had a garden party in the Áras this week, at which he spoke about the “aberrant voices” we’ve been listening to on our radios. It was clear who he meant: the boyos in the leather loafers who kicked the proverbial crap out of the country’s finances.

Higgins said the real story from Ireland is not those rapacious voices but “the heroism of a people determined to secure a just, prosperous and sustainable future”.

I was thinking about the heroic people I know – not many – and thinking it must be damn hard to keep your Batmobile shiny in the current deluge of disillusion.

My friend’s son celebrated his 15th birthday the other day; my own son will be 17 next month. We were talking, she and I, about the long summer, slowly unfurling, ahead of them both. I was complaining that my son parties late, rolls out of bed past midday; my friend reminded me that her son often sleeps in two-hour snatches and can go nowhere without supervision.

My friend’s son used to like to play with the big boys in his crèche, to jump out from behind a sand box and say, “Bee!” – his version of, “Boo!” He was talkative and engaged and happy; he liked to draw.

He was 17 months old when, one by one, his words began to go, then eye contact, then his interest in eating. By Christmas of that year he was twirling around on the floor on his hands and knees, not looking up when his name was called.

My friend and her husband began a journey; like all heroes, they had to gather their weapons before going into battle.

Their beloved little boy hardly slept. They bought a personal computer, stayed up all night, began to investigate. They learned quickly that you had to go it alone, that you had to scour for resources, that there was no magic cure.

On their journey they met other heroic people: a brilliantly prescient GP, occupational therapists, speech and language therapists, psychologists, other parents forging a path through a confusing terrain of both dated ideas and innovative therapies.

There were very dark times. Once it was insinuated to my friend that she may have been unable to bond with her child. There was a cruel idea in circulation, the “refrigerator mother”, a notion that belongs in the museum of a lobotomised era.

More invigoratingly, there was the implacable argument for early intervention. My friend gave up her job, trained herself in applied behaviour analysis, began working one-to-one with her child, in an effort to conquer his increasing isolation, to break through the sensory barrier.

There was a groundswell of action from parents, a fight for education for their children. They fundraised and fundraised and fundraised some more. They flew experts in from other countries, they harangued the government, they went to the European Court of Human Rights, for their voiceless children to be allowed an education.

My friend’s son has benefited from this battle. For some years now, he has had a one-to-one education. And maybe that sounds indulgent, unnecessary, but that little boy can communicate now, through sign language. He will meet your eye, hold your hand, hug; he will push in between his siblings with his computer and sit with them on the sofa to look at his treasured tank engines carry on their grand encounters while his brother and sister watch TV. And that’s big, big progress.

And maybe some forgot that small things are big, that individual lives matter more than the accumulation of profit, more than the heehaw of acquisition.

His school hours have been cut, his home help is gone, his respite hours have been decimated. His parents have one night off every five weeks. He still needs help toileting, he still needs constant supervision, he still struggles to sleep. Adolescence brought rage and confusion. And now he is 15, and nobody knows where he will be in three years’ time.

His education, forged from determination, is changing due to cutbacks. One-to-one with a professionally qualified teacher will eventually become six-to-one. The future is bleak, as essential services meet the relentless slashing of funds.

“Are you coping?” my friend was asked recently by a tired social worker, who was trying to juggle overstretched and underfunded resources. “I’m coping,” my friend answered, because it was a good day, had been a good week, the sun had shone, the trampoline was dry. “That’s good,” the social worker answered, “because I have nothing to offer you.”

My friend is tired; all the parents are tired, battle-weary. “What makes me sad,” she says, “is all the little children coming through who won’t have what my son had.”

Her family is just one family. Her son is just one, sweet child. I hope that President Higgins is right, and that we have the fight left in us to be heroic, to quell the aberrant voices, to secure a just future for all our children.

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