A Downpatrick couple are desperate to keep their five-year-old son safe at night as the youngster, who wakes frequently, has no awareness of danger, climbs everywhere and constantly tries to escape their home.
Oisin Coyle, known as Osh, has Autism, Developmental Delay and Epilepsy. He is non-verbal and his communication with his parents Marie and Greg and brothers Daniel, aged 16, Eoin, 13, and Darragh, 11, is done through basic Picture Exchange Communication and pointing. Dubbed a ‘little Houdini’ by his family, Osh has managed to climb out of two different styles of specialist bed, putting himself in dangerous positions – even breaking his leg jumping from a work surface.
A specialist safe sleeping environment would keep Osh safe at night, but as this costs £5,740 the Coyle family applied to Newlife Foundation for Disabled Children for help. Newlife is the UK’s largest charity provider of specialist equipment for children with disabilities and terminal illness.
Recognising the urgency of the situation, Newlife was able to provide Osh with a travel version of the specialist bed on loan. This has already helped significantly, but the family still needs a permanent full-sized version.
Now Newlife is calling on ‘local heroes’ to help raise the funds to keep Osh safe throughout the night.
Mum Marie said: “We were constantly worried for his safety before we had the loan bed. Osh would only sleep for a few hours at a time and would wake extremely distressed, which would wake the entire house. When he discovered he could climb over the safety gates we had placed throughout the house, things went from bad to worse. Either Greg or I needed to be awake and alert at all times.
“Osh’s levels of understanding are limited and because of this and his lack of communication skills, he experiences severe frustration and meltdowns. Meltdowns can happen at any time and tend to be quite violent. Things got so bad that he was prescribed medication to sleep at night, which no parent wants to be the case.
“In the loan bed we know he is safe and he can’t get out by himself. We are all getting more sleep now and it’s making a big difference; we have more energy to cope with the challenges of Osh’s special needs and we are able to give the time needed to his older brothers, something they have missed out on for a long time. Lack of sleep was affecting every part of life, for the whole family. Having a child with Osh’s special needs feels like having a new-born in the house, but without the hope of the sleep deprivation ending!”
Newlife’s Emergency Equipment Loan service provides equipment to children who are in urgent need. Loans are usually for around six months while options for permanent provision are explored.
The permanent bed the Coyle family need for Osh is sturdier than the travel version and creates a safe, soft, low sensory environment; often described as a room within a room. Having this equipment would give the whole family peace of mind that Osh had a safe place to be through the night long-term and it is also somewhere he can retreat to in the day if he is overwhelmed and needs to be calm, or if he is experiencing a meltdown and needs to be somewhere he can’t hurt himself.
Mum Marie added: “Osh seems to like the enclosed space and I think and hope it makes him feel safer too. He is the brightest, most beautiful, loving boy. He would be safe in this bed as he can’t hurt himself off any hard surfaces and I would know where he is. He would also be able to come off the medication too. I think mums everywhere just want their children to be safe and happy.”
If you would like to support Osh, go to www.newlifecharity.co.uk/down and click on the Donate button next to his story. Alternatively, contact the Newlife County Liaison Team on 01543 431 444, email [email protected]
Newlife guarantees that 100 per cent of monies donated or fundraised in County Down will be used to specifically help children with disabilities and terminal illness in the county. Any money raised above the amount needed for Osh will be used to help other local children as he is just one of 16 in County Down with equipment needs totalling £19,659.
Pictured: Oisin Coyle