by Marcia McDonagh

Liam McDonagh at the family activity weekend with LEAP
Liam McDonagh at the family activity weekend with LEAP

As parents we want the best future for our sons. When we think of this future for our children we hope that they may attend college, working on a course that interests them, fires their imagination and fulfils their dreams. We then hope that they find an occupation that they enjoy, and that both challenges and rewards them. Finally we envision that their life is filled with rewarding relationships that add colour and variety to their lives. We envision the tapestry of their lives as being textured, rich and vibrant, filled with many details.

However, this has not always been the case; there was a time when we did not have the same vision for all our boys. There was a time when we allowed our dreams to be buried. Too often in life we are all guilty of allowing our hopes and dreams to be shelved. We allow them to be lost in the realities of daily living. We spend so much time listening to others telling us why our dreams don’t make sense, how our dreams may just be too difficult to fulfil; and so we bury our dreams. We have spent many a year not daring to dream—accepting and conforming to others expectations, doing as we are told. Now we no longer do so.

As parents of three boys with different support needs, we allowed the feedback from experts to shape our expectations. We allowed others to shape our dreams. This did not happen consciously or overnight. Slowly over years we allowed the biased world to influence how we thought and how we acted as a family. We spent a great deal of time and energy living with the things that were not possible and with the things that could not happen.

These limiting boundaries meant that our family lived in a small restricted world. Often we chose to stay at home rather than go out, fearing that we might encounter too many obstacles or difficulties. In the first five years we lived in the small rural village that we called home—there were members of our community who had not seen our entire family together. As a family we were unaware of the long-term consequences of our actions; we did not recognise the natural supports that were available to us and that we were not tapping into.

It was at a family activity weekend with LEAP in April 2012 that we recognised the full extent of the limitations we had been living with. It was a weekend that changed our view of our world and reshaped our dreams. We spent the weekend with nine other families sharing meals, activities and time. Every member of the family was included and supported in all of the activities that were on offer throughout the weekend. On our first morning the schedule of activities was studied by the younger members of the group. The various possibilities were analysed and the pros and cons debated. With much negotiation the schedule was agreed.

Our first activity was to be the high ropes. Not being an outdoors type of individual, I have to admit that I genuinely did not know what high ropes were. As the family groups were divided up according to the activities that they were attending, we begin to gather and chat among ourselves. I had assumed that I and one of our sons, Liam, who would have some mild mobility support needs would watch the event, but not actually participate. Often steps and climbing, even getting in and out of a vehicle, can trigger a seizure in Liam. I did not begin to become anxious until I realised that not only were we expected to participate, but that there was specialised equipment we were required to wear. My immediate thoughts were of the obstacles and difficulties that could arise in the activity. I was more comfortable in not challenging the status-quo. When the team suggested that Liam needed to go only as far as he was capable and happy to, I realised there was no major difficulties or obstacles—only those in my own head.

My husband and I stood on either side of Liam and supported his initial steps onto a log lying at an incline leading to the first set of ropes. As the other families cheered and clapped Liam made his way up the log. The smile that was plastered all over his face said everything. He met the challenge and taught us a very valuable lesson: It was not Liam who could not meet the challenges of this world but his parents. The limits that were in place had been established by our own fears and bias.

The families, facilitators and staff did not see difficulties, limitations, or disabilities; they just saw people and potential. Regardless of the support needs of any individual there is always a way to facilitate the fulfilment of their potential. Our family left that weekend with a renewed vigour and optimism for our life and for the future. We decided that we were going to create a dream for our family’s future that was not dictated by fear, prejudice, or others’ limited vision. And so our new journey has begun.

We haven’t completed that journey, in fact we have only just begun. We are still building the new vision and we are aware that this may not be easy—there will be obstacles and difficulties along the way, but we are no longer fearful of them. I am willing to forgive our past prejudice as I recognise it came from a place of fear. We spent so many of the early years fighting to care for and protect our children that caution became our default position. However, if we continue to wrap our children in cotton wool we will not allow them to challenge their own abilities and grow. They will not be able to show the world what they are truly capable of.

Marcia and Michael McDonagh, from Crusheen, Co. Clare, have three boys, Liam, 17; Coleman, 13, and Oisín, 11. Liam has a diagnosis of intellectual delay with epilepsy. He has attended St Clare’s special school in Ennis for the past 11 years.


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