Liam McDonagh is 17 years old and will officially become an adult in November. But unlike many boys his age, he won’t be looking forward to college or work.
Since he had his first seizure at just seven months old, the Co Clare teenager has been suffering with epilepsy, global delay and autism, the latter diagnosed when he was six.
When Liam turns 18, he will lose access to the child services that have supported him to this point, so a plan needs to be made for his future.
His parents, Marcia and Mike, don’t know where their son’s future lies once he is no longer classed as a child, but they are determined that whatever route he takes will be tailored to his needs.
They have nothing but praise for the treatment and services provided for their eldest son so far, since they moved to Clare 2001, after spending years in California. (Liam has two younger brothers – Coleman, 13 and Oisín, 11).
Grand mal seizure
"Liam was a perfectly healthy baby and we had no issues with him at all until the morning of his seven-month birthday when he suddenly had a grand mal seizure which lasted 40 minutes," recalls Marcia.
“We were living in the US at the time and the seizure was the beginning of what was to continue on a daily basis.
"We moved back to Ireland a few years later and as soon as we got established in Clare, the Brothers of Charity [BOC] became involved with us as did Enable Ireland. Before long we enrolled him in St Clare's School in Ennis, a heart-warming and exciting place which has been a wonderful resource and a huge support to both Liam and us over the years," she says.
“He is currently working through the ASDAN [skills accreditation] programme with them and will hopefully earn his certifications by the time he leaves.”
Amazing services
"BOC has allowed us to function well as a family and Hazelwood respite house has provided an amazing service over the years, taking Liam on day trips, cinema visits and other social experiences which are good for his development.
“All of the people from the different services have been a pleasure to work with – professional, caring and resourceful in often difficult circumstances.
“But we are still unsure of the plan when he turns 18. Mike and I are working on a vision for the future.
“We want to create a plan which is about Liam for Liam. By that I mean we want to create something specific to our son. We are hopeful that we will be equally as fortunate as we have been with our experiences so far.
“Much like every parent, I want Liam to have a fulfilling and happy life,” says Marcia. “In order for this to happen, we are looking at Liam, who he is, what he enjoys and then asking the question, what will constitute a full and meaningful life for him?
"We are not looking at the services first and then choosing, but looking at Liam and deciding how we can go about finding the supports he will need to facilitate a good life."
Appropriate future
"For too long we have accepted what is available without asking if it is appropriate or do we want it. So, at this stage, we know that because Liam loves nature, that will have to be a part of his future,"says Marcia.
“He is a part of a large extensive family so he will need to maintain and foster those connections, he is a member of a small rural village and we are ensuring he is active in the community and known within his home place. Liam enjoys people and likes to interact with them. However, sometimes this can be overwhelming and so it is our job to find the balance for him between social and quiet time.
“As we approach his 18th birthday, I am not as worried about the future as I have been. I have a renewed sense of hope because I now believe we are empowered to make decisions that work for us and that this is not something I have to do alone. There are people in our families, communities and within service providers and advocacy groups who are more than willing to help.”
