When Gina McAdam was pregnant with her first child, 11 years ago, she had a feeling something was wrong; her baby was not moving. Her doctors scoffed at her. “You midwives,” they said, “you’re all the same. You know what can happen so you worry too much.”
But it turned out Gina McAdam had toxaemia, which can deprive the unborn child of oxygen. Her little boy Fiachra (pronounced Feekra), was born six weeks early. He was small, cried a lot and did not put on weight as he should.
He was 10 months old before a CAT scan revealed he had severe disabilities, including spastic quadriplegia, epilepsy and visual cortical blindness (his eyes can see, but his brain cannot process the images normally). What he registers visually is unknown because, like most children with this problem, he is also unable to speak. He has an intelligent mind trapped inside a helpless body.
Gina McAdam is angry, but she does not want pity. She wants people to understand the difficulties of life with a disabled child because, she says, many families do not have the aids and services they need. She says the level of help in some areas has fallen in the past decade, and she is alarmed by recent revelations that the Spastic Society of Victoria faces big cutbacks due to a $1 million financial black hole. Services for children with spasticity are already not what they should be, she says.
She is glad her son was born 10 years ago and not today. “When Fiachra started in early intervention (physical therapy) at 14 months of age, we were getting 120 hours a year of therapy time – and more like 220, by the time you counted all the extras, like psychological services. Now, children in early intervention are down to 40 hours a year. (Forty hours) is a waste of money. It will do nothing for the children.”
Spending a day with Fiachra explains why. Every milestone he has achieved – gaining some control over his right arm, standing with the aid of calipers – has been won at the expense of hours of one-on-one help; every small thing he does requires the help of an able-bodied person. But what his family and therapists have contributed in time and faith, Fiachra has matched with determination.
Take drawing. He must be positioned carefully at a table and force his weaker hand to hold on to a small post, to keep him steady. He sighs with impatience. He grips the special felt pen the wrong way and must struggle to release it; he throws his head back with the effort, his mother gently stroking the back of his hand to try to help it relax. The fruit of his labors: half a dozen random lines.
Fiachra attends a mainstream school, with the support of two part-time intergration aids. “He works so hard at school and he always wants to do more,” says McAdam. “He’s really aware of his disability and he gets very frustrated with it. My heart goes out to him. He’s a great little man.”
She must carry her little man like a little baby. Fiachra’s head lolls on to his chest, and he has extremely limited control of his body. He cannot feed, bath or toilet himself; although he can cry and laugh – he has a grin like a split watermelon – his only other verbal communication is an indeterminate “Nnnnnh”.
When Fiachra is home, his care takes up most of McAdam’s day and a fair proportion of her night. By 10am he has been fed and bathed, and his mother hauls him into his big wheelchair and fastens him in. She feeds him pieces of orange as she talks, using one hand to hold a towel under his chin and the other to place segments of fruit in his mouth for him to bite. Sometimes he is successful, sometimes his tongue gets in the way. “Try again,” she tells him patiently. She is usually awake by 5am, because that’s when Fiachra wakes. She is trying to encourage him to stay in bed listening to music until 6am. On a good night, Fiachra wakes and needs attention about four times; last night he cried almost non-stop. It meant a bad night for the whole family, including father Brian and Fiachra’s younger sisters, Clare, 7, and Ciara, 5.
It’s hard to know what the problem is, McAdam says. Sometimes it’s his asthma; sometimes his body goes into spasm and he can’t get out of it alone. Maybe he just misses the attention he has in daylight hours. But his parents cannot accept the sleep clinic’s advice to respond to him only twice, then let him cry himself to sleep. “He can control-cry all night. He ends up soaked in perspiration; his hair is wet, his pillow. I just don’t feel comfortable with leaving him like that.”
And McAdam worries they might end up ignoring an urgent need. Fiachra has seizures that tend to come at night. “He could die if we didn’t find him,” McAdam says. “He fits and fits and fits; he doesn’t stop without medical intervention.”
But this morning there is another day to try to fill with activities for the children. It is a curriculum day at school, so McAdam has all three home with her. She has shadows under her eyes, but Fiachra has begun to grizzle because he is bored.
She wheels him into a small back room that holds his computer. It takes 15 minutes to set him up. “Can you move your beautiful arm for me, Mr McAdam?” says his mother, helping him bend it. She holds it so that when he begins a purposeful movement, she can help him complete it and tap the big green control button.
As he can learn about the world only through sound, his computer has been programmed to read information to him. He also uses it to “write” stories. His last story was of Fiachra, the lonely dragon.
Another computer that he uses to “talk” works in a similar way. It reads out options to him, and he slides his arm to the touch screen when it announces the choice he wants. It is a painfully slow process.
But still it has transformed his life, relieving much of his frustration at not being able to express himself. His hand goes into spasm as he tries desperately to find out about the reporter who has been quizzing Mum.
While his mother explains the funding problems, Fiachra chooses: “It’s not fair.” And then he struggles with the computer’s limited vocabulary to make social chit-chat, asking whether his favorite leisure time activity is shared: “Woman, do she go to restaurant?”
It has cost the McAdams’ $20,000 for Fiachra’s technology. They could afford it only because a business friend of Brian’s organised a funddraising drive for them. The McAdams have been unable to get funding from the Education Department, and the government program that provides funding for adults’ communication aids will not help anyone under 18.
The buck-passing maddens Gina McAdam. “Australia spends less per capita on early intervention than some Third World countries,” she says. “All children, able-bodied or not, should have equal opportunities. It’s wrong that your potential should depend on whether or not your parents can pay. For these children not to have computers and communication output devices is like not giving other children pen and paper.”
Her hopes for Fiachra’s future are the same as those she holds for his sisters: she wants to see them all at university.
An hour at his communication aid leaves Fiachra exhausted. McAdam packs away the machinery and the toys the two girls have been playing with. They are an independent pair; they have to be. “Clare toilet-trained Ciara,” McAdam says. “They shouldn’t have to be so good. I try not to ask too much of them.”
McAdam heaves a tired Fiachra from his chair to her lap; he spends a lot of time there, because the chair becomes uncomfortable. But her back is starting to feel the strain of lifting him in and out of chairs, on and off toilets and beds, so this is his first such cuddle today.
Does she get any time to herself? Well, at one point she did start some weightlifting classes. “I need to be strong,” she says. In every way.
CUTS TO CARE
The chief executive officer of the Spastic Society of Victoria, Vici Funnell, confirms that the society has had to cut back its early intervention program, despite research that highlights its significant benefits.
The problem is not government funding cuts; in fact, she says, State Government funding to the society has increased over the past three years. The difficulty is that the number of children in need of help has increased.
There are two reasons for this: the definition of children eligible for services has widened to include more recently recognised conditions such as autism and attention deficit disorder, and the number of babies surviving into childhood despite severe cerebral palsy has increased.
Funnell says the society regrets that it can no longer offer an integrated holistic therapy program to as many children or as intensively as it could in the past. But the society has been running at a deficit in order to prop up such services and it can not continue to do so. The $1.4 million spent on early intervention will drop next year to $600,000.
A spokeswoman for the Minister for Community Services, Denis Napthine, says young people attending school are able to apply for communication aids through the education department. Napthine’s department funds aids for children not at school.
She says both departments are committed to working out a more consistent approach to this issue and any cases in which children have not received help should be referred to the department.
First published in The Age.