Linda O’Kane never knows when her son, Jake, will hit her next. I spent four days last week with Jake, who is 14, and Linda. There had been no violence the previous week, but the week before that he had hit her twice. Three days after I finished my reporting Jake unexpectedly assaulted a woman in public, and then he bit Linda when she went to intervene.
“Most of the time I don’t speak,” says Linda. “It might go on for five or 10 minutes. You can’t talk. He can’t hear you he is so distressed. There’s punching, kicking, pulling hair. He drags me down to the ground.”
When Jake was a toddler he was diagnosed with autism. In March 2003 his speech and language report from Our Lady’s Children’s Hospital, in Crumlin in Dublin, included the statement: “Jake was diagnosed with a moderate to severe severity of autism and severe developmental delay.”
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In November that year a report on Jake from the South Western Area Health Board described him as “achieving test scores comparable with the severe range of intellectual disability”. It also noted: “He shows a number of strengths in that he presents as a busy, well-loved, healthy and content little boy.”
“Autism has to be one of the most selfish conditions I have ever come across,” Linda says, matter-of-factly. “It’s a self-absorbed condition. At the end of the day none of our kids asked for this, and they all deserve the best we can give them. Through no fault of his own he’d have no empathy for me being sick or unwell. It’s all about me, me, me, isn’t it, Jakey?”
“Yes.”
“Who loves you?”
“Mammy!”
“How much?”
“Loads and loads!”
‘I didn’t even know what autism was’
Linda and Jake, who live in Crumlin, are a family of two. Jake’s father has not been around since the day Linda told him she was pregnant. “I remember my da giving me a piece of advice, saying you can’t make a man stay with you if he doesn’t want to – just let him off,” she says.
When Linda was pregnant she gave up her rented apartment in Terenure and moved home to her parents, Phyllis and Seamus, in Drimnagh. She went back to her job as an accounting technician three days a week when Jake was three months old. Her mother minded him when she was at work.
Linda’s sister, Marie, had been in Toronto for many years. When Jake was 20 months old she took him to Canada to visit his aunt, uncle and cousins. “Marie was concerned that he wasn’t making much eye contact and wasn’t talking. He had a few words but not as many as you’d expect. I’d had my suspicions, and I did feel that there was something wrong, but little boys often develop more slowly than little girls.”
Marie said Linda should take Jake to see a Toronto paediatrician, Dr Norman Saunders. He told her that day that Jake had pervasive development disorder, or PDD, a term for children or adults who are on the autism spectrum, and that he needed early intervention from a multidisciplinary team. “I hadn’t a clue what PDD was. I thought [the doctor] was nuts. I was in shock. I thought they were all nuts, that Marie was being a drama queen.”
Jake had developed a habit of eating carpet pile and the wool that he plucked from Linda’s cardigans and jumpers. (She liked to wear mohair.) On the plane home from Toronto he wriggled under the seat and tried to gnaw at the floor covering.
Back in Dublin, worried, scared and confused, Linda took Jake to her GP. “I said, ‘Most babies want to climb the stairs. My baby wants to eat the stairs.’ ”
A series of referrals was followed by a clinical diagnosis. In December 2002, aged two years and four months, Jake received his Irish diagnosis of autism, to add to his Canadian one. “I didn’t even know what autism was,” Linda says. “I didn’t know any people with autism. I was still living in Drimnagh. I came home and told my parents.”
Her parents didn’t know anything about autism, either. A well-meaning neighbour told Linda, “It’s only a phase. He’ll grow out of it.”
“I was crying at home in Drimnagh one day after he got the diagnosis,” Linda says, “and my ma said, ‘It has happened, so get over it, and get on with your life,’ and that’s what I’ve done ever since.”
To try to understand her son’s condition Linda borrowed books from the library, “but a lot of them were very high-tech, and I couldn’t really understand them”. She turned instead to the internet. “I started doing my own research online, and early intervention jumped out at me.”
Through doggedness Linda secured a place for Jake at Saplings, a school for children with autism and complex needs, in Kill, Co Kildare. “I begged them to take him,” she says. “I had a diary, and I was keeping notes of everyone I contacted, and then I’d follow through. Once I had a contact name I didn’t let you go.”
While waiting for a place at Saplings Linda managed to get 10 hours a week of resource teaching for Jake at home, where he learned colours and numbers.
“He still had very few words,” she says. “He had a few words, like ‘granda’ and ‘doggie’, when he was one, and then they vanished.”
Jake started at Saplings just before he turned three. “He wasn’t speaking,” Linda says. “He wasn’t toilet trained. It was all about early intervention. Initially it was all about routines and seeing what he was capable of. The thing was, how did I get him down there every day? Because I lived and worked in Dublin.”
She went to her employers and asked if she could work afternoons only. They agreed. “I used to drive him to Kildare every day, and my da would come with me. When Jake went to school we just hung around. We’d go for a walk, or have a sandwich in the car, or go into the hotel for a cuppa, and meet other parents doing the same thing.”
When Jake was finished Linda drove them back to Dublin and dropped her son and father home. Her mother took over Jake’s care, and Linda went straight on to work from 2pm to 6pm.
“I did it for about two years,” she says. “I found it exhausting. We were still living at home, and I was sharing a room with Jake. It was very, very stressful and very tiring, but I would have gone off my rocker if I hadn’t the job to go to. I reckon the job saved me from going nuts. I had to put everything else out of my mind when I went to work.”
When Jake was five Linda moved out of the family home and into the two-bedroom house she and her son now live in. Initially she rented it, but two years ago she managed to buy it from Dublin City Council. “I saved every spare penny I had, because I didn’t have a social life any more.”
Linda has DVDs of milestones in Jake’s life, including his First Communion, which he made with several of his Saplings classmates. “Hold my hand, Seanie,” Jake solemnly tells the big yellow teddy bear he’s clutching as he goes up to the altar alongside Linda to receive communion. “Aw, Jaysus, listen to that,” Linda says, gasping, her hand over her mouth, half laughing, half crying.
Another of the DVDs is of Jake, aged about four, at Saplings, wearing a big grin and his Bob the Builder sweatshirt, imitating tasks with his tutor, clapping and pointing. “When he was younger wasn’t he awful cute all the same?” she asks proudly. Jake was indeed an adorable little boy, and he is now a tall, good-looking teenager.
At about 3.40pm every school day, if Jake isn’t going horseriding, the blue minibus that he gets to and from school – he is now at Setanta, in Stillorgan – arrives at their cul-de-sac to drop him off.
Linda is always waiting for him. She hears the bus before I do, and she has the door open in a second, calling across to Jake as he gets out, and greeting the driver and escorts.
Good days, bad days
The first time I meet Jake he sweeps into the house, gives me a sideways glance and then ignores me. He’s a blur of energy, movement and sound. On the bus he wears headphones and listens to an iPod, to help him cope with sharing a space with others during the 40-minute journey.
The first thing he does is take off his socks and shoes and then throw the headphones and iPod on the couch. Linda is a smoker, so the kitchen window is usually open. Jake shuts it right away; he is very sensitive to noise.
Next he rummages in his backpack for the items he currently likes to have in his hands: a small rubber ball with glitter inside it, and a long white plastic stem used to hold a balloon. He drops down on to the place on the sofa where he likes to sit, squeezes the ball in one hand and then flicks the plastic stick backwards and forwards with the other hand.
“Jake Anthony O’Kane! First Jake is big tall boy, then a big tall strong boy, then a man, then a big tall strong man!” he announces. Jake repeats these sentences many times a day.
When he gets up, which he does often, he walks around on his toes, pacing up and down the living room and in and out of the kitchen. Sometimes he flaps his hands while still holding his glittery ball and stick. When he’s pacing he often makes long guttural grunts.
When he's on the couch he often watches videos on his iPad. I see him laughing at Teletubbies. He has a television in his neat, orderly bedroom, and he sometimes goes up to watch DVDs. Linda says he loves Postman Pat, The Tweenies and Fireman Sam.
Recently Jake has been able to dress himself, although he still can’t tie shoelaces. This week he dressed himself after swimming. “The T-shirt was on back to front, but no matter,” Linda says. “Those little milestones are fabulous.”
Every day she tells him to close the bathroom door when he uses the toilet. “Close the door for privacy,” she chants. Sometimes Jake does, sometimes he doesn’t, and that’s a problem when they go out, because Linda can’t go into a men’s room and Jake is too old to bring into the Ladies with her.
Linda chats away, asking Jake how his day was, picking up after him and looking in the backpack for his class notebook. Every day his teacher writes a note about how his day went. Every morning Linda writes a few lines back to say how the evening went.
Today his note reads: “Jake had a very good day. He worked well and enjoyed painting. He had some time on the swings too.”
Linda sighs with delight. “Good boy!” she says, sitting down to cuddle him. He snuggles into her and babbles happily.
Some days are not good days for Jake. A couple of weeks earlier his note read: “Jake was not in good form. During swimming, Jake had an episode. We got him out of the pool and got him dressed with difficulty. He hit me a number of times, but thank God didn’t hurt badly. We had to take him back to school.”
A month or so previously the notebook came home one day with this written in it: “Jake this morning, seemingly from nowhere, grabbed a young female teacher by the hair with both hands and knocked her to the ground. He was taken to the quiet room and spent quite a while there. We didn’t go out for our trip as we were still a little concerned for him.”
“Dinner is?” Jake asks.
“Steak.”
“Steak and?”
“Vegetables.”
“Vegetables and?
“Waffles.”
“Waffles and?”
“That’s it.”
“That’s it.”
Five minutes later they repeat this exchange, word for word, and continue until Linda starts to cook dinner. As she works in the kitchen she calls out to Jake, who is now playing with his iPad.
“This is your . . .” she calls.
“Home.”
“This is where you . . .”
“Live.”
“Me and you are . . .”
“A family.”
From the classroom to the swings
On one of the days I spend with Jake and Linda I go to Jake’s school, all 54 of whose pupils, in 11 classes, are on the autistic spectrum. Some of the children need to be in a classroom by themselves.
Jake is in a class of four at Setanta, with a teacher and two special-needs assistants, or SNAs. Two of the other children are nonverbal – which is to say they do not speak, or speak but are unable to use speech meaningfully – and one, like Jake, is verbal.
Before the school day begins there is a commotion in the ground-floor corridor. A child has punched a member of staff in the face. His glasses break, his face is cut, and he has to go home.
Setanta is one of very few schools whose patron is the Health Service Executive. It was founded in 1965 by the Eastern Health Board, and the pupils who attended were under the board’s care. At that time it was known as St Loman’s Special School and was in Palmerstown in west Dublin, next to St Loman’s Hospital, where most of the pupils lived. It moved to Stillorgan, in south Dublin, in 1995.
It did not begin as an autism-specific school, but today it is the only autism-specific school in Dublin that accepts children between 12 and 18. The HSE remains its patron, and maintains a clinical team on site.
Each child who attends Setanta is brought to and from school by minibus or taxi, with an adult escort. Jake’s blue minibus arrives at school at about 9.15am. Before class starts the children have some downtime in the yard, a bleak enclosed area with a roundabout and a lot of concrete. Plans for a new school would bring onsite Ballyowen Meadows, a primary school in Loughlinstown that is associated with Setanta. Meanwhile, pupils and staff have to make do with what they have.
Jake’s first class of the day is PE. His group joins another in the small hall; all boys. The PE teacher is brisk, full of energy and focused on the pupils; several SNAs help out.
One of the first activities is trying to shoot a basketball into the hoop. Very few manage it. Jake doesn’t. He periodically stands with his back to the class, staring into a long mirror.
Others activities follow: walking on benches, crawling under a mat, passing a plastic puck with plastic hockey sticks. Every child is encouraged to his or her best, and there is applause and cries of “good job!” when someone achieves something.
Jake does not last the session. He wants to get out of the noisy hall. His SNA brings him out to the swings, a place Jake loves. He has a swing at home; Linda says he will spend half an hour on it at a time.
During the day I spend with Jake I follow him and his SNA five times from the classroom to the swings. The children work on a reward method, so if Jake completes five pieces of work he can choose a reward. He could have computer time, for example, or look at books, but at the moment he always chooses to go out and swing, and he always swings on the same swing.
Every time we go out to the small but pleasant grassy playground, which has four swings and two trampolines, I wonder what happens when it is raining, or freezing. Staff say it is much harder for everyone when the children cannot get outside regularly during the day.
The small hall where Jake did PE is used on wet days, but it is not ideal, as not all children mix well with others, and noise can be a particular problem. The staff hope the new school will have better facilities, whenever it is finally built.
Sometimes in class Jake wears what his SNA tells me are ear defenders. These are big headphones that filter out the noise that other children make. He wears them at break and lunchtime, in the break room upstairs, where the children eat their midmorning snack and their lunch. He always sits in the same place.
After the first break Jake does not want to take off his ear defenders when the children go back to class. He starts asking questions so quickly that I can’t catch most of them. The SNA asks if he would like to go to his quiet room. Later the SNA tells me that asking so many questions is a signal that Jake is agitated. The previous day, after similar behaviour, Jake tried to hit him.
‘There is never enough money’
During the lunch break I talk to the principal of Setanta School, Loman O Loingsigh. “It happens every couple of weeks that a staff member goes home because of aggressive behaviour,” he says, referring to the earlier commotion in the corridor. “You deal with it as it happens.”
The windows in the building have been reinforced with Plexiglas, as pupils had often broken them. The door at the top of the stairs is kept locked, and staff monitor it, as some pupils have tried to run out of school. O Loingsigh gets up to lock the door of the room we’re in, as a pupil keeps wandering in and standing in a corner.
There are many types of autism, and aggressive behaviour is by no means universal. But it is not unique to Jake.
I ask O Loingsigh about the range of aggressive behaviour of his 54 pupils. “Hitting out at staff – sometimes at each other but mostly staff. Kicking, headbutting, throwing furniture. You have self-harming too. Some try to run away. And some pupils are dangerous.”
How would he define dangerous? “They’d punch people in the head, get them to the floor, pull their hair, throw anything at them, from a book to a chair,” he says. “You have to be careful with knives and scissors. Some classrooms don’t have them. When the children get older, and physically bigger, the risk increases.”
Before he was principal he often worked with the most challenging children. Has he been assaulted? O Loingsigh shrugs. He has. Many times. It comes with the territory. He describes it wryly as being battered. Some children show signs that they may strike out; others are unpredictable.
“Aggressive behaviour of children is something that is quite hard for parents to talk about,” he says. “They don’t want to say: ‘I can’t control my child.’
“But if someone is having serious behaviour issues at school you can assume it doesn’t stop because 3pm comes and they go home. You always assume what happens at home is worse than what you get to hear.”
The numbers are continuing to increase at Setanta. The school received 24 new pupils last year, and only eight left. “With bigger numbers you have more potential for dangerous situations developing, and with challenging behaviour more staff are needed,” says O Loingsigh.
He wearily cites additional funding as the solution, for more SNAs and more equipment and more of all the things the school and its pupils need. As it is, the school and its parents raise funds for the extra equipment it needs. “There is never enough money,” O Loingsigh says. “We ask for voluntary contributions from parents. We do cake sales, coffee mornings, bag-packs.” On one of my days with Linda and Jake a note comes home about a parental rota for bag-packing in aid of the school at a south Dublin supermarket.
O Loingsigh says that “the chief worry of every parent who has a child in the school is what will happen to them when they reach 18”. The support the system offers his pupils falls away when they turn 18. If they receive an adult day placement it becomes the responsibility of the parent to bring them there and back every day. There is no regular door-to-door taxi or minibus service. Respite care, which Jake and many other children at Setanta use, and which is available seven nights a week there, is no longer an entitlement.
To get respite care after turning 18 means going on a waiting list. Placements do not always work out, and there is the possibility of a young adult being left to sit at home, with nothing to do, and the parents having to take sole responsibility for them. “The stress on parents is very big when their children are in their last year here, and then the children pick up on the stress at home,” O Loingsigh says.
When I come back from talking to the principal Jake is taking some time out in the quiet room next to his classroom. He goes in here whenever he needs space, accompanied by his SNA. On the wall is a personalised chart headed: “My body gives me warning signs before I get upset. I might: Laugh in high pitch; Say things again and again and again; Twist my face; Grind my teeth; Rub my eyes; Start to stare at people; Wring my hands around. When I do these things, my body is telling me I am getting upset.”
There are two big colourful bean bags on the floor that Linda bought for Jake to use, at a cost of €300, and a blanket. Jake spends as much time in the quiet room as he needs, lying down or curled under the blanket, just him and his SNA. Sometimes he spends all day there, other days no time at all. For a while the three of us remain in the quiet room, Jake under his blanket, none of us saying anything.
The teachers and SNAs at Setanta are unfailingly patient and calm as they deal with a range of difficult situations. They are attentive, respectful and authoritative, as required. The staff also look out for each other; they crack jokes and swap news at breaks of how their classes are doing that day. They SNAs know their pupils extremely well, as they rotate classes every six weeks, so none is left for a term or a year in a particularly challenging class. Whatever these dedicated staff are being paid, it is not enough.
‘Linda finds it hard to cope’
When Jake was 10 his behaviour was so challenging that Linda became very stressed. A HSE report in February 2011, by a consultant child and adolescent psychiatrist, recorded that Jake has a “history of autistic spectrum disorder associated with negative behaviour. Today his mum informed me that she is finding his behaviour increasingly difficult to manage; that there have been increasing numbers of physically aggressive behaviours which are increasing in their frequency and intensity . . . Linda is finding herself under increasing pressure due to this escalating behaviour, and finds it hard to cope.”
For a period around that time, Linda admits, she drank too much at home. “I was drinking at that time because of the stress of the demands placed on a single parent, looking after someone with special needs and being socially isolated in the evenings,” she says. “The strain of it. How do you fill out a 14-hour day at the weekend with a kid interested in absolutely nothing? If people judge me for it I’d ask them to come and live with me and Jake for a couple of weeks, to see how they cope.”
It came to a point where she could not cope. Jake spent seven months in respite care. She visited him regularly, and he went back to live with her when she was able, with the support of her social worker. “I hope I am never in that situation again,” Linda says. “It took me a long time to build up his trust again.”
‘Work is the only place I don’t think of autism’
Linda works four mornings a week at an office in Park West Business Park. “Work is the only place I don’t think about autism,” she says. “It forces me to think about something else except autism and to talk about something else other than Jake.”
I go with Linda to work one morning to get a glimpse of the time in her day that is not dominated by thoughts of Jake. The first things I see are a box and a poster for Irish Autism Action. Linda is collecting used mobile phones on behalf of the charity; 165 phones can be exchanged for a used iPad 2 and a stylus; 185 can be exchanged for a used iPad 2, stylus and protective case. She has nominated Jake’s school as the beneficiary.
Linda’s workstation, on the second floor, has photographs of Jake and other family pinned up, and an artwork by Jake, of yellow flowers. It’s airy and calm on the floor. No phones ring; there’s just the steady click of keyboards and occasional quiet conversations. Through the venetian blinds are lovely views of the Dublin Mountains.
Linda has brought croissants and iced doughnuts for her colleagues, and as she passes the basket around there is banter and laughter. Across the city, Jake’s school day will have started 45 minutes ago. Linda works only mornings so that she can be at home to greet him every afternoon.
As she turns on her computer and starts to leaf through statements and receipts I open a thick folder that she has brought from home. It contains records of Jake’s long journey though the health and school services, going back to the 2002 diagnosis from Dr Saunders in Toronto.
Linda has written notes on every letter, document and report she has received. “Called.” “Replied to.” “Sent letter.” “Called again.”
There are also pages and pages of handwritten notes on old to-do lists: who to contact next about various referrals, or attempts to get Jake into his schools. It is a meticulous record of love and persistence and the fierce, unwavering desire of a parent to do the very best for her child.
‘I wish people would talk about the aggression’
I had got a taxi to the office. When we get into Linda’s car to go home, behind the front-seat headrests is a large piece of Plexiglas, dividing the front and the back of the car. Last September, on the M50, Linda was caught off guard when Jake started to kick her.
“I usually take exit 9, and that day I decided to take exit 11,” she says. “Then I’m suddenly being kicked in the head. My heart was going ba-boom, ba-boom. Can you imagine trying to drive on the M50 with one hand on the wheel and the other trying to fend off an assault from the back? I couldn’t concentrate on driving. I was so scared I thought I was going to vomit.”
Linda managed to get off the motorway, pulled in, got out of the car and waited for Jake to calm down. But he didn’t. “I called the police, because I didn’t know what else to do,” she says. The gardaí escorted Linda and Jake home.
Linda told her social worker, Setanta and Jake’s clinical team about the incident. She wanted to put his behaviour on record. He was 13 at the time. She installed the Plexiglas in case there’s another incident.
At 14, Jake already stands more than a head taller than Linda, who is of very slight build. He is indeed a big tall strong boy. “We could have the best day in the world, but it can take one second for it all to go belly-up,” Linda says.
One night Jake came into her bedroom and brought her to the floor. It has not happened again, and she continues to leave her bedroom door unlocked. “I’m not going to become a prisoner in my own home. I’m not going to live in fear,” she says.
Linda does not know why so few parents speak about dealing with the challenges of aggressive behaviour by children with autism. “I think people are ashamed,” she says. “To me, being assaulted on a regular basis by my child is a form of domestic violence, and I wish people would talk about it more. Other parents talk endlessly about their autistic kids, but they don’t talk about their own mental health. People need to talk about the fact that they’re stressed about what their child is doing.”
She recalls meeting another mother of a child with autism for coffee one morning. At one point, as she fixed her hair, the woman’s sleeve dropped down . “I could see her bare arm,” Linda says. “It was covered in bite marks and bruises all the way down. I had known her for a few years, and she had never said one word to me about this behaviour of her son’s. Why couldn’t she have talked to me about it? We could have shared our stories. I know it would have made me feel less alone.”
‘Jake can’t help the way he is’
On Thursdays Linda takes Jake horseriding, at Cherry Orchard Equine Centre, in Ballyfermot. I go along with them. Jake chatters away in the back of the car.
“Jake Anthony O’Kane! First Jake is big tall boy, then a big tall strong boy, then a man, then a big tall strong man!”
“Me and you . . .” Linda says.
“Together forever and ever!”
Then Jake says, “If you eat razors, what will happen?”
“You don’t eat razors, you goose.”
“If you eat ouch, what will happen?”
“You can’t eat ouch, you goose.”
“If you eat nose clip, what will happen?”
“You wouldn’t eat a nose clip, you goose.”
And so the game goes on. Jake and Linda chat away in variations of this what-will-happen exchange.
Before the half-hour riding session, which is for children with special needs, we stop at Fonthill Retail Park, in Clondalkin. Linda stops here every week to get Jake a treat. We go into Londis, passing boys in school uniform, younger than Jake, who stare as he lopes in. Jake is always smartly turned out; Linda says she hopes this will make him attract less attention. But people look twice at him whenever we are out, partly because of the ball and plastic stick he likes to carry.
Jake goes straight to the hot-food counter. His current preference is for potato wedges. It’s a treat because Linda usually makes sure he eats healthily. “I’m not adding obesity to his disabilities,” she says.
The young woman behind the counter looks at Jake curiously. Linda stands behind her son and coaxes him through asking for the wedges himself. As the assistant hands over the order Jake stares at the big oven behind her.
“In oven is?”
The assistant moves away from us.
“He’s being nosy, aren’t you, Jake?” Linda says. “He’s just wondering what’s in the oven, love.”
Her tone is firm and clear and determined. Her son is not going to be ignored.
The assistant comes back and looks properly at Jake, who is still staring intently at the lit oven.
“Chicken,” she says, with a nervous attempt at a smile, looking at Linda.
“Chicken!” Jake cries.
Although Jake has been told every day since he started walking that he must look both ways before he crosses the road, he bolts out as Linda is paying. I see him run back to the car without looking.
Linda is very upset, and she scolds him, gently, reminding him of the danger. He doesn’t respond. Jake never looks before he crosses a road. He cannot recognise the danger; not yet, anyway. Linda cannot let him out of her sight in public, and it is a constant source of worry. She always parks as close as possible to wherever they are going.
We have our drinks and snacks in the car. The Londis has seats, as does the Costa Coffee next to it, but Linda knows that Jake will never sit in either for more than a minute or two. He prefers to sit in their car and eat. He does not like public scrutiny.
Neither does Jake respond well to random noise, such as that made by babies, small children and dogs. Linda has often had to apologise when Jake has pushed or tried to slap small children, especially when he was younger. “Your nerves would be in shreds,” she says. “Anyone could get a wallop. It was so unpredictable. I could never leave him alone. It was watch, watch, watch, all the time.”
Parents tend to be very understanding once she tells them that her son has autism. “I heard one daddy saying to his little girl who Jake had pushed over, ‘That boy is sick,’ and I know he was trying to explain the behaviour to her,” Linda says. “But it was so hard for me to hear. Jake can’t help the way he is.”
What will happen when he turns 18?
A clock that hangs in Linda and Jake’s home has a photographic face. It shows a lovely shot of Linda and her sister, Marie, hugging each other, smiling and joyous, when they were in their 20s. Under the hands are the words “I am with you 24/7.”
Linda had it made as a gift when Marie moved to Canada, so that the sisters would always be, in some way, together.
Marie died in November 2013, at the age of 51, of cancer. She left two young children: a daughter, and a son who was diagnosed with autism the year after Jake was. After her death Marie’s husband offered Linda the clock back. It reminds her every day of her only sister.
Linda’s mother, Phyllis, died last November. “My mother and my sister always had my back, and now they’re both gone,” Linda says. Her mother adored Jake, and had a habit of turning up every week with a trolley of groceries – and a listening ear. “My ma was always my sounding board.”
Linda has a brother, Paul; they take turns looking after their father, Seamus: shopping, cleaning, taking him on outings and for lunch. Jake went to see his beloved grandmother in the funeral home. He has often asked for his grandmother since her death. Linda, Jake and I are in their living room as Linda tells me this story.
“Granny is?” Jake says now, from the couch. He is not long in from school. He has gone up to his room and come down dressed only in underpants. Mortified for my sake, Linda has sent him up again to put on more clothes. He has come back down wearing his dressing gown.
“Up in heaven with holy God,” Linda says.
When Linda drove Jake to school in Co Kildare they would listen to Gerry Ryan. “Jake used to love Gerry Ryan on the radio. It was something about the tone of his voice,” Linda says. “When he died I told Jake he was in heaven with holy God. And now Jake thinks that Marie and his granny are in heaven with Gerry Ryan.”
“Gerry Ryan is?” Jake says.
“No more Gerry Ryan. Gerry Ryan is in heaven with holy God,” Linda says.
“No mammy goes to heaven?” he asks.
"No mammy goes to heaven," Linda reassures him, and Jake goes back to Teletubbies on his iPad.
Linda worries all the time about what will happen to her son. She worries about what will happen when he turns 18 and becomes too old for Setanta. As Jake’s sole carer she also worries about what will happen when she is no longer there.
“I can’t even bear thinking about it. What will happen to him when I die?” she says. “What I want for Jake is safety, happiness and a purpose.”
Linda does not dwell on what her life would have been like if Jake did not have autism. “Not really,” she says. “I know I should have achieved more in my career, because I’m a smart lady. I’d have a better job, a bigger house, more holidays, more money, and maybe I’d have met someone.
“If I have regret it’s that I never met anyone, because my social life went. But it is what it is, and I will not allow myself to be jealous of other people and what they have. I won’t allow myself to be a bitter person.”
Jake is fed up with the two of us talking. He calls out from the sofa: “Dinner is?”
Linda gets up to start dinner.
“Who loves you, Jakey?” she says as she passes him.
“Mammy!”
“How much?”
“Loads and loads!”
