Coping with disability - a story of care behind the headlines

THERE are many unfortunate children who make headlines for all the wrong reasons, the best bits of childhood stolen through some tragic mishap at birth.

Generally, all most of us know of their stories is what we glean from media reports, often from the steps of a courthouse.

We hear slight details of a life severely compromised by oxygen deprivation, delayed delivery, questionable judgements on behalf of medical staff. The upshot can mean life in a wheelchair, possibly with mental impairment, limited communication skills, and no chance of competing in something as basic as school sports day. We shake our heads at the awfulness of it, count our own blessings, and move on.

The families affected have no such luxury. Heartbroken parents must face a future they never ever contemplated, among them the Butlers, from picturesque Kilmacleague, Dunmore East, Co Waterford.

Two weeks ago, a smiling, vibrant 8-year-old Alex Butler appeared on the front of this newspaper, in the automated wheelchair that gives her a tiny sliver of independence in a life otherwise entirely dependent on the love and goodwill of others.

Quadriplegic and with cerebral palsy, but mentally sound, her outlook could have been entirely different had she been born 10 minutes earlier. That’s according to evidence given a fortnight ago in the High Court. The court heard that had her delivery not been delayed, she might never have seen the inside of a courtroom and her parents would not have had to embark on a tough legal battle.

The Butlers were in the process of suing the HSE and two consultant obstetricians at Waterford Regional Hospital for injuries Alex suffered at birth when a settlement was reached.

It took eight years to get an admission of liability and agreement on an initial settlement.

Two weeks ago, a HSE apology was read out in the High Court as part of the settlement of Alex Butler’s action for damages, with a €1.4m interim payment.

The case against the two obstetricians, one of them a locum, was struck out.

The Butlers aren’t at all surprised at the length of time it took to win any concessions from the HSE. Getting an automated wheelchair for their daughter took 18 months, says Alex’s father, John Butler, despite it being vital for any little bit of independence.

It took the intervention of a politician to get a medical card, Alex’s mother Sonya says, despite the fact her daughter has the most severe form of cerebral palsy. Getting replacement wheelchairs every three or four years is a constant struggle, John says.

For the Butlers, the settlement brings temporary financial relief, but no dilution of the bitterness. “You never get over the bitterness, you grieve every day for the child you should have had,” Sonya says. Their bitterness understandably stems from their conviction that what happened to their daughter was entirely preventable.

“It was so preventable; how unlucky do you have to be?” Sonya, 38, asks. John, 35, says his daughter is a “constant reminder” of what happened in the early hours of Apr 12, 2005, when Alex was delivered by a locum in the absence of Sonya’s consultant.

Sonya says she and John were told they are “not the victims, she [Alex] is”, but that in a way, they feel they are victims too because many of their own rights and choices have been taken away as a result of the needless damage to Alex. “This is what frustrates me. Me and Sonya never come into it at all, yet we’ve been given a sentence we have to take,” John says.

He is “elated”, he says, that her needs will be met financially over the next two years on foot of the settlement, but “outside of that, nothing changes”. “I always say ‘when this is over’,” Sonya says, “but it never is. Even when we were leaving the High Court in Dublin, I didn’t have that feeling.”

And, indeed, the cycle of care is never ending for John and Sonya. You could argue that this is a requirement of parenting, but when a child has a disability, the demands are tenfold.

To the Butlers credit, the trauma they suffered at the birth of their first child did not stop them adding to the family, although Sonya sought reassurance first from another consultant. Robyn, 5, was safely delivered in five hours, and Erin, aged 2-and-a-half, in two.

Keen to see what life with Alex entails beyond what we read in the headlines, myself and Irish Examiner photographer Des Barry travelled to the Butlers’ lovely home in Dunmore East.

What follows is a typical day in the life of the Butler family...

7am

Sonya heats milk for the Weetabix and starts preparing scrambled egg. “I try to give Alex softer food that’s easier to eat, not just because of the risk of choking, but so that she can eat quickly and get to school on time. The same applies at lunch times,” Sonya says.

Erin and Robyn, two delightful little creatures, arrive in their pyjamas to the kitchen looking to be fed. Erin heads for the TV in the living room where Disney Channel’s Good Luck Charlie keeps her entertained. John heads to the bedroom to rouse Alex.

7.20am

Alex is already awake and smiling in the utterly girly pink bedroom she shares with Robyn. She sleeps in a double bed with a camera monitor attached so that her parents can keep watch from a distance.

The decision to share with Robyn was an added safety precaution, Sonya says. The 5-year-old is expected to be her older sister’s eyes and ears. I ask if that’s a big responsibility for someone so young? “She has a lot of responsibility, but ask any mother who has a child with special needs if it’s any different for their siblings, and you’ll find it isn’t,” Sonya says.

Robyn has had to grow up quickly, she says, and is also trying to understand why her older sister is getting so much attention. Sonya says this can be hard for her, but the upside is, “she doesn’t have a disability”. Robyn sits on the bed as John lifts Alex out.

That single action reveals the full extend of Alex’s helplessness. Her torso is limp in his arms, yet her limbs are stiff and jerky, moving involuntarily. John puts his hands under her armpits and walks her slowly to the en suite bathroom where he straps her on to the Flamingo, a special toilet seat which supports her sitting, allowing some dignity.

When she’s finished in the bathroom, John carries her back to the bed and puts on her school uniform. It’s effectively like dressing a newborn. Alex lies on the bed helpless while John gets her ready.

7.45am

The girls eat breakfast while watching TV. Alex loves American teen sitcom iCarly and was devastated when it ended last November. Now she watches the repeats. John feeds Alex as Sonya expertly does her hair while Alex sits strapped in her pink mobile chair.

Sonya trained as a hairdresser and is deft at styling. Alex’s hair is French-plaited and pinned up, with a pink flower completing the look. “I have to put it up to keep it out of her food, otherwise it would be falling in her face and she can’t lift it back,” Sonya says.

Alex is spoonfed as her sisters are fed and dressed. Her parents say she has a great appetite and that her general good health surprises everyone.

There’s always a danger of choking so she mustn’t be rushed. When she’s finished, Sonya sticks a scopaderm patch on her neck, used by fishermen to stop motion sickness, but in Alex’s case, to stop drooling, prompted by her poor posture. Her coat is then put on.

8.30am

John lifts Alex out to the car, strapping her into a special seat in the 6-year-old Chrysler Grand Voyager. Her power wheelchair is already in the back of the car and is loaded and unloaded using ramps.

Robyn and Erin are strapped in next to her and they set out for the nearby St Mary’s National School in Ballygunner. Lunch has been packed in Alex’s iCarly bag by Sonya. “I give her noodles or a small portion of shepherd’s pie or lasagne, because again, they’re easy to eat,” Sonya says.

8.40am

John unloads Alex’s chair, and then Alex, and she uses her power chair to get to the front door of the school. Along the way, various school pals greet her and she flashes that terrific smile. Robyn goes and stands with her own class in the yard, as do the other pupils, but Alex obviously can’t and John accompanies her to the classroom.

8.55am

Alex sits in the front row, close to the door for easy access and because it’s probably the best place for her special chair with its supports to keep her sitting upright. Her 1st class teacher is Nichola Hayes and she says Alex can manage perfectly well with the right support.

The right support arrives in the form of Margaret McGrath, Alex’s special needs assistant (SNA), who is armed with a box of jewellery for Alex to choose from. It’s clear there’s a close bond between the two.

School principal Killian O’Reilly, whom the Butlers have enormous respect for, has kindly given permission for me to sit in on class. The other students arrive and take their places; some greet Alex on the way in.

There’s no sense that the other students are in any way uncomfortable with Alex or that they view her in any way different to themselves. Class kicks off with a discussion about changing seasons (it’s May 1) and then it’s on to An Aimsir, with children taking turns at presenting the weather forecast.

During all this time, Alex is utterly engaged, clearly thriving on the classroom atmosphere. Margaret is there to turn her chair when necessary, to place a raised support for reading and writing on her desk, or to hold her hand as she guides her through written exercises.

Down the back of the classroom, I am shown Alex’s computer, joystick, and printer. Her work is printed by Margaret and stuck in her workbooks.

10am

Time for resource class. The school has three full-time resource teachers and Alex is blessed in this respect. Under enrolment rules, she should be attending another school but they would have had to build a new building to accommodate her needs.

And so Alex got to go to St Mary’s, a school with corridors more than wide enough to accommodate a wheelchair, and with SNAs and a resource class vital to her remaining in a mainstream school. The indications are that Alex is faring very well, and is particularly good at maths. Her mother’s hope is that, in time, with the right supports, she will be able to go to university or an institute of technology. “College wasn’t really an option for me,” Sonya says. “I’d like my kid to be able to experience that.”

The resource teacher this morning is Corkman Philip O’Leary and he sits with Alex in front of a Dynavox. This is essentially a computer screen displaying a range of pictures or letters that the user can click on to spell out what they are trying to say.

It’s Alex’s best shot at communicating and Philip is hopeful that in time, the Dynavox will be refined to the size of say, an iPad, making it portable and acting as Alex’s means of communicating in the future. I watch while Alex, with great concentration, uses a joystick to move the arrow around the screen and form sentences according to what Philip suggests.

Because of the stiffness of her limbs, the exercise requires superhuman effort to land the arrow in the right place. Philip spends half an hour each day helping Alex with her literacy while a second resource teacher, Maura Upton, spends the second half-hour of the class on numeracy.

11am

Breaktime. Generally, Alex starts lunch earlier than the other students because her feeding can take quite a while. Margaret is around to take her to the bathroom or for any other transfers that are necessary.

12pm

If it’s Monday, Alex’s class, including Alex, goes swimming in Splashworld, Tramore, with an assistant. She loves it, Sonya says.

1pm

For big break, Alex is transferred to a walker that stands at the back of the classroom. It looks cumbersome but it allows her to be part of playtime outdoors. The school has drawn up a roster of kids for lunchtimes so that Alex and her SNA are never on their own in case of choking or seizures. Alex is on epilepsy medication, but Sonya says seizures are rare.

2.45pm

John returns to the school to collect Sonya and Robyn. To her parents’ and her own credit, Alex has only ever missed two days of school in three years. She received full attendance certificates for two years. She never missed a day at playschool. She was devastated to miss two days this year when she travelled to Dublin for the outcome of the court case that led to the settlement. “She cried the whole way to Dublin,” Sonya says.

3pm

Back at home, Alex is lifted out of the car and into the mobile chair in the hallway. In addition to her automated wheelchair, she has a manual wheelchair, a mobile seat in the living room and one on the landing upstairs where she does her homework.

“It’s a whole load of added expense on top of running a house. For disability, everything quadruples in price,” John says.

Alex is strapped to her chair and wheeled to the kitchen for snacks before Sonya or John lifts her upstairs to do her homework. At this point, Emma Butler (no relation) arrives from the Irish Wheelchair Association. She comes from 3pm-5.15pm Monday, Wednesday, and Thursday, and for two hours every second Saturday. If she is on leave or sick, there is nobody to fill in. Those days are tough for Sonya.

Emma helps Alex with her homework, using a computer programme similar to the one on the Dynavox.

Alex does well at her homework but is drained by the time it is done. She is then lifted into the playroom and strapped to a seat where she sits at a table with Emma and they play with the Lego she got for her birthday. The day I visit, she brings a birthday invite home from school. Sonya is relieved the party’s being held in the child’s home. I ask how they manage at birthdays in playzones. “John lugs her around the bouncy castles,” she says.

They get her involved in as many activities as they can: Horseriding, trampolining, drama, swimming. They even brought Alex ice-skating, pushing her in her walker around the ice. They’ve been to Disneyland twice and are hoping to go again this year, with an assistant.

Sonya dreads the summer. Going to the beach is a chore. The last time she brought Alex she kept falling over because they didn’t have her chair on the beach. “I saw people looking at Erin running away and Alex falling over. They were probably asking, ‘Why would you bother?’,” she says.

4pm

Sonya and John are downstairs, trying to keep on top of the housework and oceans of ironing and laundry, amplified by the vomiting bug Alex had earlier in the week.

Sonya tells me she irons a week’s supply of uniforms on a Sunday night, one for each day for Alex, and two tracksuits, just to stay on top of things. Between herself and John, they have a good routine. Tasks are done as if on auto-pilot, the upshot of eight years of practice.

John is a stonemason by trade and built their beautiful home, but work on it started before Alex was born so Sonya feels it’s not really fit for purpose and the family is hoping to move somewhere more suitable and less isolated for Alex’s sake.

They can’t use the upstairs of their home in any meaningful way, other than for a playroom and storage. It’s also where John does physical therapy with Alex in the evenings to keep the length in her tendons and to stop muscle contracture, a deformity that is the result of a stiffness or constriction of the muscles, joints, or tendons that restricts normal movement, limiting the range of motion and causing difficulty moving hands, stretching legs, and straightening fingers.

John is currently studying physical therapy, one of the most common treatments for contractures. It helps increase range of motion and strengthen muscles. However, his course involves travelling to Dublin every weekend to the Irish Institute of Physical Therapy.

“I wanted to do something that will help Alex down the road as well as helping to earn a living,” John says.

Sonya feels the strain of John’s absence at the weekend. Her own family, she says, are not always in a position to help out. Sonya’s father had surgery two years ago. Both her parents travel abroad for the entire summer, so there is no help available during the summer months. John has no family in the locality.

Unless there are two pairs of hands on deck, it’s almost impossible to leave the house. I read Sonya’s account of a trip to the cinema — lifting and transferring Alex from different chairs, after first transferring a suitable seat to the cinema; lifting Alex upstairs, strapping her into her special seat to keep her upright and feeding her popcorn and chocolate buttons throughout the movie. It was exhausting.

5pm

All through the afternoon, in between the myriad household chores, John and Sonya field and make phone calls, all around catering for Alex’s needs. On the day I visit, they are preoccupied with trying to organise the collection of a new manual wheelchair from the Central Remedial Clinic in Waterford, which a frustrated John says has been sitting in the suppliers for the past two weeks.

Both also make calls getting quotes for a Ford Galaxy which they reckon will allow more room to transport Alex, her wheelchair, and the family. “It never ends,” Sonya says. “There is so much involved. I’m a mammy, a nurse, a physio, a mediator. It consumes your life.”

Nonetheless, Sonya and John make time for each other to do individual things that they enjoy. When the kids are at school, Sonya takes the opportunity to go for a run or go to the gym a couple of times a week. She finds it therapeutic. “I could spend my day crying, but where will that get us?” John gets to go playing football and last Wednesday, he got to go out and watch the Bayern Munich v Barcelona game. He doesn’t really drink.

Sonya says she looks forward to a glass of wine on a Friday night, but that’s the limit. She needs to be alert at night time when Alex wakes, which she regularly does, thirsty for a drink (taken from a sports bottle) or uncomfortable because she needs to be turned on her back. Sonya says she sleeps with “one eye and one ear open”.

6pm

With John and Emma gone, Sonya psyches herself up for the evening ahead. She prepares a meal and gets ready to feed the girls. Dinner takes a while for Alex. After that, it’s usually chillout time in front of the TV before Sonya gets Alex ready for a bath or shower. Physical therapy usually takes place on a red mat in the playroom before Alex goes to bed. John demonstrates functional therapy, sitting Alex on a low wooden seat and placing a runged stand in front of her. He helps her to clasp her fingers around the rungs and to stand up.

7.15pm

Bathtime. Not wishing to intrude, Sonya shows me notes of a diary she kept for her legal team. She details how she lifts Alex out of her chair on to her special toilet seat. She then brushes her teeth. Next is the shower where she has a shower seat.

After, Sonya lifts her on to towels on the floor. “Alex is dried and powdered like an infant,” Sonya writes. She seats her on the floor because it’s safer. She puts on Alex’s PJs and sits her in one of her supported chairs where she brushes and blowdries her hair. Alex is given anti-seizure medication and yoghurt before bed.

7.45pm

Alex wants some playtime so the girls and Sonya play together before going to bed shortly after 8pm. Alex is lifted from the floor, and placed in her bed, her blankets tucked in, back scratched, and monitoring camera switched on. Some nights John or Sonya read her a story, depending on how late it is.

8.15pm

Even with the girls in bed, there are constant checks on Alex before Sonya or John retire for the night, and frequently after. When she was sick earlier in the week, Sonya slept in Alex’s bed with her arms linked, so she would feel if her little girl stirred.

Unsurprisingly, Sonya and John admit they find their lives stressful. Their social life is nil. It’s hard to find anyone qualified enough to mind Alex at night. Sonya went for counselling for years after Alex was born but says that “you can’t fix a broken heart”. She tells me she would have coped better with losing her husband than having to cope with what happened to Alex.

“I will have to watch Alex struggling for the rest of her days to carry out the simplest of tasks, and emotionally, that destroys me,” Sonya says.

From what I see, John is a powerhouse of a dad. “He is hands-on — he has to be, there’s no other way about it,” Sonya says.

I ask how they see their daughter’s future. “She’ll always need at least two people looking after her,” Sonya says, to cover 24-hour shifts. “The right to so much as scratch her nose was taken away from her. She is so reliant on others to participate in any shape or form. She will definitely always need at least two carers.”

However, Alex is pretty happy once she has somebody to help her, Sonya says, adding that her beautiful little girl is “entitled to participate like every other child”.

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