THE mother of a 13-year old boy who is autistic, non-verbal, and has violent outbursts, said he is still suffering despite an availability of funds.
‘My son, Jack, has been approved for 30 hours of home support a week but we cannot fully access it because of a lack of staff at CoAction,’ according to Deirdre Threadgold, who lives in Rosscarbery.
During periods of respite, Jack needs two support staff at all times because he has some behavioural issues. In other words, if he has an outburst the home support worker needs back-up.
Deirdre has been the sole carer for Jack since her marriage ended nine years ago when she moved from France back to her native West Cork.
She said: ‘Our relationship ended because of the distance between us and the struggle I had in caring for Jack and ensuring he got the support he needed within the healthcare system.’
However difficult the situation was when Jack was young, Deirdre said it was manageable, and Jack was able to lead a happy and full life.
But in the last 12 months, the situation has become extremely stressful and now Deirdre bears scars on her forearms from wounds inflicted by Jack during one of his meltdowns. ‘Jack had been happy to go to St Patrick’s Boys NS in Skibbereen for eight years because he had established trust with the teachers and the SNAs. It was almost like a home away from home for him,’ said Deirdre.
‘However, in his final year, when he reached puberty, he became aggressive and his anxiety levels went beyond what he could manage.
‘Jack would have spent a lot of those school days under a duvet, withdrawn and stressed out, and, invariably, it would result in an outburst.
‘It is hard to control these outbursts in a classroom environment because Jack is a strong, well-built boy, who has no idea of his own strength, and cannot communicate what is troubling him.’
It was only when his primary education ended that the real difficulties began. During the summer, he became very depressed and withdrawn and refused to leave the house.
In September, when he was due to attend secondary, he absolutely refused. He would go as far as the entrance, but would literally close down and refuse to move.
Since then, Jack has stayed at home with Deirdre and she believes he is experiencing added stress because there is a lack of structure and routine in his life. ‘Things got so bad in September that Jack became increasingly more aggressive,’ said Deirdre, who produced a clear plastic bag with clumps of her hair – hair that Jack had pulled out during one of his meltdowns.
‘A meltdown is the term that is used to describe his levels of frustration and panic. It is not a tantrum. This is serious. In these situations, he has no control over what he is doing.
‘It is because of these meltdowns that I need two home support workers at any one time, because one person on their own is not safe.’
Deirdre said a friend recommended that she contact Victoria Healthcare Organisation (VHO), which is located at Ard Carraig in Skibbereen.
‘I was at my wit’s end and the organisation very kindly offered me 20 voluntary hours, which meant that I had some respite. I was able to follow that up with seven weeks of privately paid help, but I’m afraid my money has run out.’
The time Jack spent with these support workers was, in fact, a game-changer because at that stage, Deirdre said she was beyond exhausted.
‘If Sam, the chief executive of VHO, hadn’t stepped in when he did, I might have had to make some very painful decisions. For example, on one occasion, I was told that the only other official respite would have been to send Jack via ambulance, or garda car, to a hospital for psychiatric assessment.
‘I cannot imagine any scenario in which I would put Jack through the trauma of being manhandled into an ambulance or garda car,’ said Deirdre. ‘I was lucky I discovered VHO. The fact that their two home support workers were male meant that I could mentally rest knowing that Jack – who has developed a tendency to self-harm – would be safe, and that they would be able to protect themselves and manage any situation.
‘I also noticed a huge improvement in Jack’s behaviour, which comes from having routine back in his life, as well as regular and consistent support workers – people with whom he can develop trust.
‘There is no doubt in my mind that with VHO no longer involved, Jack is going to regress and we are both going to be, yet again, at serious risk of harm and self-harm.
‘Given the severity of my situation, a member of the West Cork Child Development Services recommended that 60 hours of home support would be appropriate.’
The HSE granted 30 hours to CoAction, which effectively means 15 hours, because there needs to be two people at any one time.
Deirdre also said CoAction cannot consistently provide two members of staff between the hours of 11am and 4pm, which are Jack’s ‘vital hours.’
She acknowledged that CoAction is currently providing 30-hours support each week (as well as being engaged in a recruitment drive) but she said the hours are not consistent and that it mostly requires her to be the second support worker, which means little or no respite.
Deirdre said: ‘I am appealing for help because this is a critical time in Jack’s development.
‘I believe that if there is funding available, a parent should have some say in how the support is administered. I need help between the hours of 11am and 4pm. I need that help. I need the HSE to help me in my hour of need,’ she pleaded.