Sir, – Parents of autistic children throughout the country are exhausted. The stress and strain of caring for their child with autism, along with their siblings, is challenging.
A parent watching a child deteriorate because they are not getting the interventions and the therapy they require is soul-destroying. Parents are worn out trying to secure the intervention and therapy needs of their child. The mental health and wellbeing of parents are tested to their extremes, and in many cases parents’ hearts are broken as they are left with no choice but to put their child or adult in residential care because they are not being supported or enabled to provide care at home.
This results in facilities being provided that are not always in the best interest of the child or adult with autism, and in a lot of cases with care staff who are not supported properly or trained and are left to care for very complex and severe conditions of autism. More concerning is that the child or adult’s therapy intervention and care needs in many cases are not being met. The most vulnerable in society are being failed.
My son Ronan is 14 years old. Ronan was diagnosed with a autism at the tender age of two year and nine months. We have battled for 14 years to get Ronan the interventions and services he requires and which help him with his daily challenges and quality of life. We continue to battle to this day.
We never expected his condition to be as severe as it is, and all we want and ever wanted is to put a smile on his face and alleviate his fears and anxiety about the world around him. We want to continue caring for Ronan at home but need to be enabled to this with support and regular respite. It will continue to be challenging caring for him but with the proper supports in place his quality of life and ours would greatly improve.
There is a “tick the box” system in place in Ireland for disability grants which in most cases excludes autism. My son Ronan does not “tick the box” and therefore we do not qualify for so many grants which would enable us to meet the needs of our son and family in caring for him in our home. This would be a fraction of the cost of residential care. My son is not a “box” and his care needs must be assessed and provided for on the merits of severity, not on a “tick the box” process.
Ronan does not have a voice that can be heard or understood. We as parents are his voice. Please listen to us and parents like us throughout the country. – Yours, etc,
BARBARA GILLEN,
Robertstown, Co Kildare.