'It's constant torture': Heartbreak as 4yo excluded from kindergarten after epilepsy diagnosis (2024)

Alfie loved going to daycare.

It gave the now-four-year-old, who is neurodiverse, crucial consistency and a regular opportunity to see his adoring friends and teachers.

He was thriving.

But everything changed earlier this year when Alfie was diagnosed with focal epilepsy and subsequently removed from an early learning centre in Melbourne's north where he'd been going for years, run by national chain Guardian Childcare and Education.

"It was really abrupt," his mum Cassandra said.

"I actually didn't believe it. I had a really big cry."

'It's constant torture': Heartbreak as 4yo excluded from kindergarten after epilepsy diagnosis (1)

The ABC has chosen not to use the family's surnames or show the children's faces.

Alfie's epilepsy gives him daily seizures, which can last minutes, and during which he usually stares blankly. He can feel them coming on and alert those around him.

The condition is managed through medication and the seizures require someone to sit with him until they pass.

Cassandra said Guardian initially appeared to have no problem keeping Alfie on, and told her staff needed training on how to look after Alfie and administer his medication.

Cassandra and Alfie's father, David, then engaged Epilepsy Australia to provide the training at a cost of $50 per staff member and offered to keep him home for a few weeks while it was conducted.

"That went on for eight weeks and we kept checking in," Cassandra said.

"We then got an email [asking for] a quick chat. We called them ... and then they said out of the blue they can no longer provide care for him."

'It's constant torture': Heartbreak as 4yo excluded from kindergarten after epilepsy diagnosis (2)

Cassandra said being removed from Guardian has seen Alfie regress, particularly in social situations, which is "where he needs the most support".

Explaining to Alfie why he can't go back to Guardian has been difficult.

"We said, 'they're just learning how to look after you and your seizures'," Cassandra said.

"And so, he still asks me, 'do they know how to look after me yet? Do they know how to get me the medicine'?

"It's heartbreaking, because how do I say to him they don't want to learn ... because it's too hard for them?"

'Textbook' discrimination

Guardian has more than 170 early learning locations across Australia and looks after more than 10,000 children each day, according to its website.

In the letter to Alfie's family informing them of his removal, seen by the ABC, Guardian said it had strict legal obligations to ensure the safety of all children it cared for, and that it couldn't guarantee Alfie would have "constant monitoring".

"We have conducted a detailed risk assessment to ascertain whether we can safely accommodate Alfie's medical requirements, including hiring and training of additional staff members to specifically monitor Alfie, to recognise the seizures, and administer the medication," the letter said.

"However, it is our assessment that Guardian cannot safely accommodate these additional requirements and as a result we can no longer provide care for Alfie."

'It's constant torture': Heartbreak as 4yo excluded from kindergarten after epilepsy diagnosis (3)

The workforce issues facing the childcare sector are well-publicised. Staff are often stretched to the limit and some centres have had to close due to lack of educators.

While Cassandra said she understood that, she said Alfie's seizures were unremarkable and a Royal Children's Hospital neurologist had called them "boring".

The Disability Discrimination Act legally requires early education services to make reasonable adjustments and ensure children with disability are not victimised because of disability.

Cassandra said Alfie's situation was "textbook" discrimination.

"They should not be able to get away with this," she said.

'It's constant torture': Heartbreak as 4yo excluded from kindergarten after epilepsy diagnosis (4)

In a statement, Guardian said it did not discriminate in its enrolment practices.

"We respectfully treat each child as an individual and focus on their individual needs. We have a number of children who are attending our centres that have diverse medical needs, including epilepsy," it said.

Guardian said the call to remove Alfie from care was made "following consultation with the centre team who worked with the family, our internal Safety and Practice Teams, plus external bodies".

"The decision to modify or cease care to a child is taken very seriously and is subject to significant internal review. This decision was subject to the same level of scrutiny given Alfie has been a much-loved part of our centre, and we acknowledge the impact of the decision on him and his family."

The Victorian Department of Education was contacted for comment.

'Setting kids up for failure'

The case reflects an issue advocates say is common across the country.

Children and Young People with Disability Australia (CYDA) surveyed parents in 2022 about their experiences with early childhood education.

One in five reported their child had been refused enrolment, nearly a quarter said their child was only allowed to attend for a limited number of hours, and nearly 30 per cent reported exclusion from excursions or events.

The exclusion and segregation of children in educational settings was a major theme during the disability royal commission, as well as one of the biggest talking points following its final report.

CYDA CEO Skye Kakoschke-Moore said early childhood education was a critical time in life for kids with disability.

'It's constant torture': Heartbreak as 4yo excluded from kindergarten after epilepsy diagnosis (5)

"Attending ... means children with disability are part of their community, are making social connections, that their families connected to the community as well," she said.

"Children continuing to be refused enrolment, or only enrolled in very limited hours, is setting them up for failure very early on in life."

CYDA's survey also showed while 46 per cent of respondents "strongly agreed" their child received adequate support when they were included, 40 per cent "strongly disagreed" or "disagreed".

"While initially families are made to feel welcome, when the rubber hits the road, it seems the support being provided is not meeting expectations of the parents or child," Ms Kakoschke-Moore said.

In a public statement prompted by the ABC's story, the Minderoo Foundation's Thrive by Five campaign said Alfie's case highlighted the systemic issues facing children with disability and their families when it came to early childhood education.

"Early childhood education is not treated like the essential service — and the essential right — that it is," director Jay Weatherill said.

"That is causing too many children and families to miss out, whether because they cannot afford it, or there is a shortage of places in their area, or because centres do not have the resources to accommodate children with disability."

'It's constant torture': Heartbreak as 4yo excluded from kindergarten after epilepsy diagnosis (6)

Alfie now splits his time between two new early learning centres, both much further away from the family home and his sister's school. Cassandra said neither had reservations about taking her son on.

However, he still misses his old friends and teachers.

"Guardian is so close to his sister's school that he sees it every day, so it's constant torture for him," Cassandra said.

"Alfie said to the new kinder teachers, 'I'm going to have a seizure, can you look after me?'

"And all he wanted was a cuddle because he just doesn't have the confidence in people anymore that they're going to look after him."

Cassandra said she was worried about Alfie's confidence so close to him starting primary school next year.

She'd hoped he'd be able to graduate from Guardian with his friends and head to school together happy.

Cassandra said she hadn't decided to speak out just for Alfie.

"It's about any kid with disability. It's about fighting for what's right."


Posted, updated

'It's constant torture': Heartbreak as 4yo excluded from kindergarten after epilepsy diagnosis (2024)


'It's constant torture': Heartbreak as 4yo excluded from kindergarten after epilepsy diagnosis? ›

In short: The parents of a four-year-old boy are furious he was removed from his long-time early learning centre after being diagnosed with epilepsy. They say he was discriminated against by Guardian Childcare and Education

An academic discipline or field of study is a branch of knowledge, taught and researched as part of higher education. A scholar's discipline is commonly defined by the university faculties and learned societies to which they belong and the academic journals in which they publish research.
https://en.wikipedia.org › Outline_of_academic_disciplines
, a major provider with more than 170 locations across the country.

What are the long term effects of childhood epilepsy? ›

Between 30 and 50 percent of children with epilepsy will develop a behavioral or mental health problem. The types of behavioral problems associated with epilepsy include attention deficit, hyperactivity, anxiety, depression, aggression, and autism spectrum disorder.

What should kids with epilepsy not do? ›

Children who have uncontrolled, frequent seizures should know that certain activities are restricted. For example, they should not swim alone or swim over their head. In fact, no child should swim alone! Children with any type of seizures should play or exercise with a buddy if possible.

How does epilepsy affect the development of a child? ›

Even when seizures are well controlled, epilepsy may present a host of other issues that can impact a child's development and ability to function normally. Cognitive impairments that affect language, memory, attention, and other abilities critical to normal development are common among people with epilepsy.

How do you discipline a child with epilepsy? ›

Parents will often discipline and parent the epilepsy, not the child. They fear that if they stress the child by scolding too much, the child will have a seizure. Don't let the seizures change things. If discipline does precipitate seizures, tell the doctor so that can be worked on.

What is the life expectancy of a child with epilepsy? ›

In a study of Finnish children with epilepsy, 94% were alive 10 years after the onset of seizures, 88% 20 years after onset, and 75% 40 years after onset (Sillanpää et al., 1998). Ninety-six percent of these children reached the age of 10 years, 89% the age of 20 years and 80% the age of 40 years.

Can childhood epilepsy damage the brain? ›

The effects of seizures during early life

Research performed over several decades suggests that seizure-induced brain injury is highly dependent upon developmental age, with the juvenile and adult brain being more susceptible to damage and rewiring after seizures than the brain of the newborn.

What is forbidden in epilepsy? ›

Foods that contain stimulants, such as the caffeine found in coffee, tea, energy drinks, soft drinks, or chocolate. Alcohol (can trigger seizures and create risk factors for seizures, such as interactions with medications) Foods that are high in salt. Saturated and trans fats.

Do kids with epilepsy struggle in school? ›

In general, epilepsies do not affect intelligence, learning ability, and performance. However, seizures and drugs can temporarily impair learning ability and performance. Many children with epilepsy do not experience difficulties in school but performance problems can occur [14,15,16,17,18].

Who is the most famous person with epilepsy? ›

Theodore Roosevelt: Throughout his life, Roosevelt suffered from epilepsy and was prone to epileptic seizures, but that did not hold him from his convictions. Upon the end of the Spanish-American war, he was elected governor of New York in 1898.

What age do kids grow out of epilepsy? ›

About two-thirds of all children with epilepsy outgrow their seizures by the time they are teenagers. For some, though, epilepsy may be a lifelong condition. It is important for parents to partner with their health care providers to help understand their child's condition and treatment.

Can epilepsy be caused by childhood trauma? ›

Whilst emotional trauma can certainly lead to seizures, a seizure in itself may not be enough for a diagnosis of epilepsy, and these are often called non-epileptic seizures (NES). To summarise, emotional trauma is not believed to be a cause of epilepsy, but it can be a cause of seizures.

How do kids with epilepsy act? ›

Complex focal seizure.

Your child may or may not pass out, or just stop being aware of what's going on around them. Your child may look awake, but have a variety of unusual behaviors. These may range from gagging, lip smacking, running, screaming, crying, or laughing.

What are the odd behaviors of epilepsy? ›

Psychosis, depression, paranoia, and personality disorders may represent a negative pole of epilepsy-related behavioral changes. The most important aspect of behavioral changes in epilepsy for physicians is to recognize and treat dysfunctional behavior.

What personality disorders are associated with epilepsy? ›

Personality disorders and juvenile myoclonic epilepsy

While one study did not identify specific correlation between PD subtypes and JME (24), the other reported strong associations between narcissistic, borderline, paranoid and histrionic PDs and JME (25).

What are the bad behaviors of epilepsy? ›

Seizure-related behaviours

Some children display changes in behaviour, personality and mood before or after a seizure. These changes may include inattentiveness, hyperactivity, irritability, or verbal or physical aggression and may occur minutes to days before or after a seizure.

What is the long term outlook for a child with epilepsy? ›

Treatments for epilepsy may help to control seizures and may result in some people becoming seizure-free. In some cases, children may grow out of epilepsy. According to the Epilepsy Foundation, around 60–70% of people with epilepsy may be able to control it over time.

Can epilepsy cause long term damage? ›

The Epilepsy Foundation of Greater Chicago says that each year, about 42,000 deaths and many more instances of brain damage follow episodes of status, and status epilepticus is the most likely form to cause long-term damage. Better control of seizures might be a key to better long-term brain health.

Do children grow out of childhood epilepsy? ›

For some children, epilepsy is a temporary problem that can be easily controlled with medication. Many kids outgrow this neurological disorder, which is characterized by two or more seizures that are separated from each other by more than 24 hours. For other children, epilepsy may be a lifelong challenge.

How does epilepsy affect a child's quality of life? ›

Children with epilepsy may experience behavioural changes that can affect their daily lives. These behavioural changes can be caused by a variety of factors related to the condition, including medication side effects, seizure activity, and the stress of living with a chronic illness.

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