‘As long as there is breath in our bodies we will take care of him’

“What would you do,” I asked the boy’s mother, “if you just couldn’t cope any more, if caring for him became untenable. What would you do if you woke up one morning and thought, This is it, I’m finished?”

“As long as there is breath in our bodies, my husband’s and mine, we will take care of him,” she answered.

I had gone with my friend Naomi to the opening of a new day service for young adults with autism. Praxis Care in Clongriffin is a smooth, clean, light-filled series of rooms that comprises the ground floor of one of the many modern apartment buildings forming the architectural heart of that community. Clongriffin is a relatively new development, its tall, pinkish blocks shadowing bleached, almost empty streets. It is a landscape that looks a little like it might have landed, fully formed, from a distant planet, on this scrubbed and levelled patch of north Co Dublin.

Naomi and I said goodbye as the gentle woman, so committed to her son’s care, wandered around the centre’s fresh, untrammelled rooms, past the bright-yellow armchair, the sensory room, the cooking area.

“Parents do fall apart sometimes,” she said.

“And then what?” I asked her.

“You tell me.”

Naomi and other families were called to a meeting and told that the relevant service provider didn't know if it would have the funding to meet their children's needs

Naomi’s son, Cillian, who is close in age to my eldest son, is autistic. He is nonverbal; he communicates through sign. His level of need is high. Over the years I’ve watched him grow into a strong, lively young man.

When my own son turned 18, his life seemed to revolve around CAO forms and hand-rolled cigarettes. I spent a couple of months lying awake at night, waiting to hear his key in the door, his Doc Martens on the stairs. Then I stopped worrying, started to see him in a different light.

The responsibility of the HSE

When Cillian turned 18, and the Department of Education no longer needed to provide any services for him, he became the responsibility of the Health Service Executive. That’s when Naomi and other families were called to a meeting and told that the relevant service provider didn’t know if it would have the funding to meet the needs of the young people in the area of north Dublin that fell under its auspices.

“Children in mainstream education get clear indications where they should go next,” Naomi said. “College, training. It would make sense that those with the greatest level of need would also be given clear indications before they leave school as to what happens next.”

She has learned that in this country answers to the most basic questions are thin on the ground

I knew how hard she had fought since his diagnosis for every step of his education, knew too how disruption to his routine meant sleepless nights and regression, stress and exhaustion for the whole family. We met outside the local shop one day during that empty summer, and she asked about my son’s plans for college.

“Anything for Cillian?” I asked.

“Nothing,” she whispered.

I knew then that she didn’t have much more fight left.

To add to her loss, Cillian’s respite, which he had had on an almost weekly basis for nine years and which he loved, also ended when he was 18. Previously, his home support had been taken away.

It is difficult to express within the confines of a newspaper column how extraordinarily hard the families I spoke to work for their offspring to be treated with equality, dignity and respect.

“What will you do?” I asked her.

There was no answer. She has learned that in this country answers to the most basic questions are thin on the ground.

Then, entirely by chance, she heard that Praxis Care, a Northern Ireland-based charity, which has a small number of hubs in parts of the Republic, was opening a day service in her postcode. Service users in Praxis each have their own plans and individual goals. These could be fitness, cooking, using public transport, joining a local team, or, for some, working in the community. Praxis is a centre built around respect for a person’s individuality, while also continuing to meet his or her needs. And, vitally importantly, it promotes social inclusion.

Cillian’s family found the energy to campaign again, and he became one of the lucky 17 young adults to find a place there.

On the day of the opening, after the assembled dignitaries had made their speeches, and flowers and congratulations had been exchanged, Jordan, one of the service users, performed a rap he had written himself. A joyous paean to life, love and belonging, it was uplifting and chastening and moving.

It is difficult to express within the confines of a newspaper column how extraordinarily hard the families I spoke to work for their offspring to be treated with equality, dignity and respect.

Centres such as Praxis are the very least young adult service users deserve. Sadly, it is the diamond light at the tip of the iceberg.