A couple of years passed.

I had always sent Christmas cards on Jonathan’s behalf to his grandparents, although I had only met them a couple of times. They reciprocated. They were lovely people who lived in an affluent suburb about an hour and a half away from us.

Then came the Christmas when I received a card from Marco’s brother’s wife. It seemed Jonathan’s grandparents had passed away. Margaret and her husband Luca sounded like a very pleasant couple and thanked me for caring for Jonathan.

The following year Luca, a senior lawyer to a very important and wealthy businessman, said that if ever I needed anything to help with Jonathan’s care, I should let him know. I was appreciative but had no intention of asking him for anything. He didn’t know Jonathan, and had not seen him since his infancy, if he even saw him then. No interest in him had ever been shown. I thought no more about it.

**********

I was still being harassed and harangued at every opportunity about having Jonathan tube-fed.

The other way to express it? I was being bullied.

The dietician employed by the disability service, no doubt in conference and collusion with the “Eating Disorder” specialist at the hospital, had devised a new strategy to reduce the effort Jonathan needed to exert for eating and drinking.

To prevent aspiration, and to make it easier for him to manage, all his food was to be puréed, and his drinks were to be thickened.

That might have worked better if the thickener they used in his drinks had a pleasant taste, or even an acceptable taste. It did not. He could taste it even when they tried a number of disguises, and simply refused to drink. He was frequently dehydrated.

It did not seem to occur to them that a milkshake or thick shake is delicious and nutritious – and is of the required thickness. Puréed banana could also be added to a milkshake, offering more calories.

No, they added more and more thickener, making the texture so stiff that a spoon could stand up in it. It was not a drink. It was sludge. He was not getting enough fluids. When I protested, they admitted, “Oh sorry, I must have added too much thickener!”

His puréed food? Why, anything could be puréed. He could have sweet biscuits soaked in milk or cream and puréed for morning tea. Lunch could be puréed sandwiches. For his evening meal, he could have salad – puréed. It looked quite disgusting, not appetising at all. There could be no pleasure in eating this. Puréed meat and vegetables, puréed sandwiches, puréed everything. Nothing had taste, texture, or aroma.

I finally asked for Jonathan’s eating skills to be assessed by an independent observer – a dietician or speech therapist (who also was responsible for eating and swallowing disorders) not associated with the group home. They, surprisingly, were willing to oblige me in this matter – and even to pay for the speech therapist’s report.

She would come to my home and observe me feeding him the food I believed he could manage, and she would also observe me offering him drinks without the thickener. She was to watch carefully, check his swallowing ability, make a report with recommendations, and we would all agree to it and follow her directions.

However, they themselves chose the dietician – a friend of the CEO’s personal assistant. That instantly made me nervous and wary – I was expecting her to be biased towards pleasing the Health Care Team and the CEO of the disability service. However, she was a lovely lady who immediately put both Jonathan and me at ease.

He managed to eat the food at a minced texture perfectly. At one point he coughed. I was alarmed, believing she would think he was aspirating. But no. She was pleased that he had “a strong cough reflex” – which would help him not to aspirate!

Her report was sent. She agreed with me one hundred percent. He was capable of eating food of moist minced texture and was able to manage only slightly thickened drinks. He did NOT need puréed food, nor very thick drinks, the “helpful strategy” the disability service was offering him. Such were her recommendations.

Suffice it to say that her report was not well received; she was never again invited to give her professional opinion.  However, they had promised to honour her report and implement moist minced food.

The promise was not kept.

First of all, there was failure to chart the new régime for several months, so it could not be implemented by the house staff, and then within a few months the “official” Dietician/ Speech Therapist started charting the puréed foods and thickened drinks again, and thus surreptitiously dismissed all the independent dietician’s recommendations.

We knew what was happening, firstly because the care workers told us, and secondly, we could see the dated instruction charts on the fridge. The care workers within the house were obliged to follow the chart – but they were not happy about it either. Their voices were heard as little as ours, when they tried to advocate for Jonathan. They were at the lowest point of the hierarchy of importance.

The Health Care Team later insisted that they had followed the report of the independent dietician for three years, however, dated copies of their directions to staff indicated otherwise – and we visited Jonathan frequently enough to take photos of the fridge charts which always had the date on them. These too were all filed.

At the end of the year following the independent speech therapist’s report, when the Health Care Team were declaring they were following the recommendations of the independent report, we went to a Christmas party at his Day Program centre.

All the young people had been brought from their homes for the special occasion, with all the invited families and friends. The spread was tantalising, and very generous. A beautiful smorgasbord was set out, and the aromas were delicious, delighting all the guests.

But the young disabled people had to eat food they could manage.

Jonathan’s plate of food was brought out and placed before him. Three scoops of food were on his plate. One was brown, the next was yellow-orange and the third was green. It looked revolting, and nearly made me sick to look at.

The brown was meat puréed with a lot of gravy, the orange was puréed pumpkin and/or carrots, the green was puréed beans or  peas - or some other green vegetables. Three mounds of what I can only describe as slop. It was very distressing. The Health Care Team had lied to us about following the independent observer’s recommendations.

Needless to say, Jonathan ate very little Christmas food.

I was upset, disappointed, frustrated … and annoyed with the power plays these people were engaged in.

This was his life. Food had been his greatest pleasure - it was the only area of personal autonomy he had. And that plate of three scoops … was what he had to eat every day!

I could not trust a word these people in authority said.

Not a happy Christmas!

For how much longer would we continue to be facing these issues?