Cork mum can't get respite care for her teenager despite fearing his violent outbursts
The East Cork mother told the 'Irish Examiner' her son is 'good-natured, polite, happy, funny...' but that anxiety causes severe behavioural problems. File photo
An East Cork mother who has not been able to get emergency respite for her 15-year-old son says she regularly has to sleep with her bedroom door locked and hide all knives in their home because of threats he has made about killing her.
The HSE has apologised for the lack of respite care and committed to examining whether alternative supports may be appropriate.
The boy has a diagnosis of autism and ADHD and is attached to the Child and Adolescent Mental Health Services (Camhs) and East Cork Disability Network services.
He is on medication for anxiety and ADHD.
His mother is the boy’s full-time carer and says she lives in fear for her life, particularly when her son’s behaviour becomes “heightened”.
Her GP wrote to the HSE in 2022 requesting “urgent consideration of emergency respite” for her son, stating that she “is struggling as his behaviour has become more challenging in recent weeks”.
The GP added that “Mum has been unable to leave the family home” and her son has “been unable to attend to school due to the deterioration in his mental state and behaviour”.
This followed an earlier call by the GP in 2020 for respite for the family.
The mother, who spoke to the on the condition of anonymity to protect her family, said: “I have been looking for respite since 2019 and got nothing.”
She also says she applied for a home care package to give her a few hours to complete daily tasks but this was refused.
She describes her son as a “good-natured, polite, happy, funny boy who loves to engage with his peers”.
“He desperately wants to make friends and be with his friends. However, he is crippled with anxiety.
“It has got to the point where we are hiding the knives. He wants to kill me, he wants to choke me. He is obsessed with death, violence, execution.”
She said the behaviour has worsened since the onset of puberty but that he also retains the emotional traits of a young child at times.
Despite his threats of violence against his mother and declarations of wanting to be infamous for causing harm to neighbours, his mother says he also retains the emotional traits of a young child. She says:
In recent weeks, the worried mother has taken his computer away because of concerns about the nature of interactions he was having online.
Her GP has given her a letter to give to emergency services in the event of him having a violent episode.
She says: “He is obsessed with knives and guns.”
He recently told a relative that he wanted a “bloody knife to stab anyone who tries to keep me off electronics”.
She says: “We have no place to look for help.”
A spokeswoman for Cork Kerry Community Healthcare said: “We deeply regret that there is a shortage of overnight respite provision for children with disabilities in the Cork area, and we are working to address that shortage. Applications for respite are made to a Regional Children’s Respite Forum, and the available respite is allocated on the basis of prioritised need.”
She said the HSE will engage directly with the family, and said: “In particular, we will examine whether alternative types of support or respite may be appropriate.”
She added: “Respite services are hugely important for young people with disabilities and for their families, and we sincerely apologise to young people and families affected by difficulties in accessing respite in the Cork area. We continue to work to re-open respite beds which have been closed, and we are working to further develop the provision of overnight respite services in Cork.”
As the start of the new school year approaches, the normal last-minute actions like buying shoes and stationery will not be part of one East Cork mother’s August chores.
Instead, she is desperately seeking emergency respite for her 15-year-old son, who finds it too overwhelming to attend mainstream school. He should be starting third year and planning for his Junior Cert exams.
She lives in fear that, one day, he will kill her — because he has threatened to do so a number of times.
The boy has been diagnosed with both autism and ADHD and is a student in an ASD unit in a mainstream second-level school. He is attending Camhs and the East Cork Disability Network Services. He cannot be sent to a special school because he does not have a diagnosis of an intellectual disability.
His mother says that while he wants to attend school, he cannot as he is not on the same level as his peers socially and emotionally.
She believes he needs to be a in special school, with peers, and able to avail of occupational therapy, speech therapy and life skills His sister is also autistic and has ADHD and dyspraxia, but is attending a unit in a special school in Cork city where she is getting on well.
Their mother has been their sole carer for the past seven years.
She feels guilty because she says a lot of her energy has to go into keeping her son stable. She fears her daughter “is the forgotten child".
"She craves going out, she wants and needs support to do simple things, like shopping in town for a day, but this is only a dream for her.”
She believes if he was attending a special school, he would be less stressed as he is in a setting now with neuro-typical students for some classes.
He is on medication for anxiety and ADHD.
“The next step is anti-psychotic drugs but there is a hold on that because his heart rate is so high that he first has to be referred to a paediatric cardiologist so we are on hold until that is done. That will be through the public system,” she says.
She speaks of her desperation to secure respite, against a backdrop of a crisis in such services.
According to Cork Kerry Community Healthcare — which has apologised to families affected by a lack of respite beds for children — difficulties in recruiting staff “mean that unfortunately, there are not currently enough respite beds to meet demand in Cork, and in recent months not all beds have been open due to staffing shortages”.
Children’s respite in the Cork area is provided by a number of HSE-funded Section 38 and 39 agencies.
A spokeswoman said: “Both we and the Section 38 and 39 agencies sincerely regret the impact of these closures and we are working together to address this problem. We are committed to working with all the voluntary agencies involved to support them to open all these beds.”
Enable Ireland is being supported to increase its bed spaces from 138 to 828 per night.
She said: “While the recruitment environment is still difficult, Enable Ireland will be in a position to offer additional respite at the Lavanagh Centre from September, and access to this additional respite will be through the Regional Children’s Respite Forum. Respite applications have been and are being reviewed to commence planning for the children who will access the overnight respite.”
The Department of Education said it could not comment on individual cases but said a number of new special education places are coming on stream shortly.
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