Family's SNA fight for son with rare condition

By Amy Lewis

Published 14/05/2016 | 00:00

Patricia O'Connor and her son Ruairi. Opposite page: Faythe school principal Liam Turner who says the situation is 'very unsatisfactory'.
Patricia O'Connor and her son Ruairi. Opposite page: Faythe school principal Liam Turner who says the situation is 'very unsatisfactory'.
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A woman whose 7-year-old son is suffering from a rare debilitating condition is forced to attend The Faythe school with him each day as the National Council for Special Education have failed to provide a special needs assistant.

Patricia O'Connor from Rockview Court has expressed her anger and frustration over her failed attempts to secure an SNA to assist her son Ruairi since the beginning of this year.

Before Christmas, Ruairi was diagnosed with Transverse Myelitus - an inflammation of the spinal cord that has left him temporarily paralysed and confined to a wheelchair. Patricia and her husband received a letter from a neurologist in Crumlin Hospital stating that her son would require an SNA in school and both the school and the parents have been trying to secure one since December. Despite this, Patricia said that her son's needs have not been met by the National Council for Special Education.

'I have been calling constantly over the past few weeks but no matter what we have done, they are not getting back to us,' she said. 'The last time I was talking to somebody there was on February 29. They told me that I was asking them to do the impossible.'

Patricia had originally been in touch with her local Special Educational Needs Organiser (SENO) who is a representative appointed to a geographical area by the National Council for Special Education. Her case was passed on to a supervisor and since then, she has not heard anything back.

Without the provision of an SNA, Patricia has been forced to attend The Faythe school with Ruairi each day.

'I'm in there for five days a week with him, for his activities, his lunch and his breaks,' she said. 'He needs someone with him in school now more than ever as he is starting to get out of the wheelchair a bit and requires help with that.'

'If he touches the ball of his foot off anything, he gets involuntary movement and gets shakes in his legs. His balance will go sometimes as well.'

Prior to Ruairi's illness, Patricia was seeking full-time employment. After five years of looking for a job, she was offered a position as a hairdresser but had to turn it down as she is attending school with her son each day. On a Thursday, Ruairi attends school with his grandad while Patricia pays the bills and her husband Martin goes to work.

'His grandad isn't around today though so my bills won't get paid,' she said.

Ruairi has had autism and sensory processing disorder throughout his life but it was only during recent months that his physical health deteriorated. In November, he was brought to Wexford General Hospital as his parents believed he was suffering from symptoms of meningitis. He was diagnosed with sinusitus and as his condition worsened within days, he was taken by emergency ambulance to Crumlin. Ruairi was later transferred to Temple Street Children's Hospital, by which stage he was paralysed.

'When we got to Temple Street, we were told it wasn't looking good for him at all,' she said. 'It was terrifying. At the time you're just saying, "keep him alive. It doesn't matter if he has to be in a wheelchair"'.

Ruairi was later transferred back to Crumlin where he was given a high dose of steroids to help to alleviate his condition.

'The steroids did work. After a couple days, he began to get movement back in his toes. He had intensive physio and rehab there. It is the most amazing hospital in the world,' said Patricia.

'We were told there that everything would be in place for Ruairi when we got home. They had arranged it all for us,' she added. 'But once we got home, there was nothing.'

Unable to get a wheelchair from Wexford General Hospital, Patricia and her husband had to buy a second-hand one themselves for €350 before they were permitted to take their son home from Crumlin. When they arrived back to Wexford, Patricia said she had to fight to arrange the physiotherapy that her son required. She is still awaiting for an SNA to assist Ruairi in school.

'The neurologist in Crumlin has given me letters that say he absolutely needs an SNA and we have passed them on but got no response,' she said. 'We are literally on the phone every day and getting no answers.'

Patricia said that Ruairi's school have been 'brilliant' in their efforts to help but that they too have not received a response.

'In the last couple of weeks, between the school and my husband, we have left at least 20 messages with the person responsible. [Deputy] James Browne has been trying to help us and he is getting no answers.'

Patricia acknowledged that Ruairi is unlikely to be in a wheelchair forever but said that until his health improves, he requires assistance in school.

'I can't bring him in to school and say that I can leave him there until 2.45 p.m. and think he is going to be safe,' she said. 'In school, I'm trying to keep him entertained. He also has autism but he is quite quiet in the class. He likes to keep to himself.'

'Sometimes he gets very down and asks "why can't I be normal?"'.

She said she is 'angry' with the lack of support she has received for her son.

'I am angry that I have had to fight for every single thing that the child has gotten so far,' she said.

Ruairi is in first class in The Faythe National School, which is situated directly across the road from the family home. Principal Liam Turner said the local SENO had been very supportive but said that the situation as it stands is 'very unsatisfactory'.

'I know that special procedures have to be followed,' he said. 'I do understand that there are two dates for SNA allocations in September and March but given the uniqueness of Ruairi's medical condition, it had to go to the supervisor. I've tried to contact them three or four times but have received no response.'

Liam said that the school are very lucky to have the support of Ruairi's parents, as well as the use of special facilities in the school.

'The parents have been absolutely phenomenal and we are lucky that they only live opposite the school. We are also lucky that the wheelchair toilet is, by fluke, just across from the classroom,' he said. 'If things were different, we would be really really stretched and we wouldn't be meeting Ruairi's care needs.'

Liam hopes that the unique case will attract attention and result in a resolution.

'My big fear is that they will put this back until September,' he said. 'Given the severity and unique nature of Ruairi's medical condition, it should be sorted soon.'

'I don't understand why there isn't an emergency fund for these cases,' he added. 'Somebody should be able to do something.'

The NCSE did not respond to a request for a comment on the situation.

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