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In 2015 we attended a one day workshop run by Leap focused on empowering families towards creating an ordinary life for their child with disability. At that point we had been learning to live with a complex physical and intellectual disability diagnosis for our son Ed. We could not articulate what we wanted for him, but we were certain that we did not want him to experience a life of exclusion and special, away from his siblings and other children.
Following the workshop with Leap we started to understand that we needed to change our language and how we spoke about Ed towards a strength based, positive articulation of who he is. We sat with our children and discussed what they imagined a good life to be, and interestingly all three held the same hopes for their life. The reality that we could be the leaders in Ed’s life while he was growing and navigating his childhood became obvious. We started to outline a vision for Ed’s future, one where he would work within his community, within a valued role, contributing his expertise and value in a meaningful way. This vision became our destination and all decisions that we make are guided by it.
Recognition of Ed’s strengths provided a foundation for decision-making for Ed. It assisted in the decision around where he would attend school. Ed attended mainstream primary school, and remained in his class every day with the support of a shared SNA. We were able to outline our vision clearly to each teacher and as a result they applied their expertise to ensure that Ed was educated using a universal design for learning approach. This allowed him to demonstrate his understanding of the knowledge gained in a way most suited to his strengths. Ed moved on from primary to secondary school. Again, thanks to the language learned and support from Leap, Ed continues to enjoy his educational journey, surrounded by his peers, in an inclusive classroom. Ed is being knitted into his community, willingly, and he is experiencing a welcome that is true and genuine. It is not based on a “special needs” approach, but rather it is based on a recognition of his unique abilities and wonderful imagination and creativity It is tempting to pick the safe route for my wonderful son, yet the” tougher” route will be the one that provides a more meaningful and fulfilling future.
Today Ed will be attending the local drumming camp. He will independently take the bus there and back. He will hang out with his peers. He will have the life of any other 14 year old. We do not need to access service, he is entitled to July Provision, but because he is knitted in community, he does not need it. This has not happened by accident, rather it has been intentionally created by his family and friends with the support of Leap, buoyed by the vision for his ordinary life, his good life.
Ultimately our vision remains unwavering; Ed will work in a paid job where he thrives, included and valued as part of his community. He will live interdependently, supported by friends and family. He will live a good life, thanks to the support of Leap in helping us to articulate and clearly outline our vision for his future.

I learned more from the Leadership for Inclusion weekend than I thought possible, it was very powerful shared with like-minded group of people who want their son or daughter to live an inclusive, ordinary life. These are the moments where ideas grow wings and fly and our children and young adults get to live happy, fulfilled, inclusive and ordinary lives. I left Galway with fire in my belly.