Caoimh Connolly is a thirteen-year-old Dublin boy with severe autism. He lives with his 16-year-old brother, Fiach; his assistance dog, Cosmo; and his mum, Adrienne, who is a single parent.
Caoimh’s autism creates an extreme brain-body disconnect, whereby his body cannot do what his brain requests. This means that he cannot talk; even body language and facial expression are challenging for Caoimh, resulting in a ‘locked-in’ syndrome. Simple self-care tasks like washing his hands or brushing his teeth are enormously difficult for Caoimh. He has the care needs of a toddler, yet he also has desires for an independent life like any other teenager.
As well as developmental and communication problems, Caoimh has many underlying health issues that require ongoing investigation and treatment. Caoimh’s difficulties often produce depression, anxiety and challenging behaviour, such as self-injury, aggression, and attempts to run away.
While Caoimh’s challenges are great, he has made amazing strides as a result of years of therapy – much of it financed via fundraising through his Trust. With ongoing intervention, Caoimh has the potential to achieve much greater independence.
Caoimh’s greatest breakthrough recently has been to finally access a method whereby he can develop real communication, beyond expressing his basic needs and wants through pictures.
He is one of the first batch of children in Ireland to follow a programme called the Rapid Prompting Method (RPM). Through painstaking daily practice at letter-pointing with Adrienne – who attends regular training with RPM professionals brought over from the States and the UK – Caoimh is gradually gaining control over his hand-movements. After a year of RPM practice at home, Caoimh is developing the ability – for the first time ever – to spell out his thoughts.
For most of his life, Caoimh was considered to have a low IQ, and to be unable to understand anything more than simple instructions. No one thought he could read. Now he is proving to have the spelling, vocabulary and comprehension of a highly literate adult. He has told Adrienne that he taught himself to read at the age of three.
During the years it appeared that Caoimh wasn’t listening or understanding, he was in fact taking everything in. By learning to overcome his movement disorder to the point where he can accurately letter-point, Caoimh is slowly climbing out of autism’s silent prison.
Support from the Trust will enable Caoimh to progress on his letter-pointing journey from the stencil he currently uses, to a laminated letter-board, to a typing device with predictive text and a voice output. It will take several years of hard work, and many training sessions for both Caoimh and Adrienne with British and US RPM professionals. But with the right support, they know they can do it. Then finally Caoimh will be able to form friendships with peers, which he has expressed through letter-pointing to be one of his biggest goals in life.
Aside from RPM, another use of the Trust over the last two years has been to finance respite. After years of care-work and fighting for her son, and in response to very challenging behaviour with the onset of puberty, Adrienne is experiencing carer burn-out. In order to keep going, she requires regular breaks, with specialised carers stepping in to mind Caoimh. The Trust has been financing this essential respite time.
Heartfelt thanks for your support. It is making a world of difference to Caoimh and his family.
* For a speech written by Ido Kedar – one of the first severely autistic non-speaking people in the world to make the breakthrough into communication through letter-pointing – visit this article and watch the short video:http://www.latimes.com/local/la-me-c1-autismland-20131222-dto-htmlstory.html
* For a speech by Adrienne on her experience with autism, visit:https://www.youtube.com/watch?v=IBz4sub7djw
* For more about RPM, visit http://www.rpmireland.com/