By Dr Adanna James, Bethesda Board member
When my mother gave birth to her first child, a son, on the eve of Christmas, neither she nor her husband had any idea of the new world that this life would have brought them into. It is a journey that only parents of children with special needs, particularly autism, may appreciate fully. While I cannot speak on her behalf, I believe that Saira La Foucade may be one of those parents who empathises with the above statement, affirming that the life of Mattheaus, her son, catapulted her into a new world that she was not, and for which she could not have been, prepared.
On June 20, 2021, Bethesda, a Ministry to families of persons with disabilities (PWDs) celebrated its sixth anniversary. The community came into being with a seed planted within this wife and mother of two, who as a faithful Catholic had loved attending the Sunday Mass. This space had, however, turned into a space of challenge, defeat and unwelcome as she tried to negotiate her son’s ‘strange’ behaviour in the Mass setting.
Owing primarily to a lack of understanding and empathy for her situation, those around her presented themselves as a chorus of nay-sayers, whose negative uncaring words and actions resulted in a great sense of unwelcome and unbelonging. It seemed that the only way out was to withdraw and remain apart from the Mass or to attend without her son. Her pain was not allowed to end there; instead, it drew her out to attempt to find a way forward for both her and her son to fully participate in the Mass. This led her to seek a meeting with then Archbishop Joseph Harris, who, having for the first time been introduced to this new world, seemed somewhat unclear on how to really address the problem.
The suggestion of a separate Mass space for Saira and her son seemed not to be the solution. You see, at that time, His Grace remained unconvinced that this was a serious problem being experienced by many, but this was precisely the issue. The severe, unwelcome experienced by many families who had children with special needs had led to parents opting to remain apart from the community or only allowing themselves to be a part of the community without their children, who responded in ways that a great majority felt were too disruptive for their hallowed space. The result: the sense that ‘we don’t have a problem’; ‘there are no families with children with disabilities in this parish’; and ‘if we don’t see it, then it doesn’t really exist, not so?’.
After much discussion, His Grace indicated that he never would have thought of such an option but hearing it from a parent brought new meaning, he then generously offered the chapel at Archbishop’s House as this ‘alternative space’ to have this new experience of Mass starting June 20, 2015. The chapel space could only hold about 50 persons and it did not seem that there would have been many attending such a Mass, so everyone was comfortable with the idea. And then here is where that seed which started off as the result of so much pain, frustration and isolation being experienced by this individual mother, blossomed before her very eyes. The fact was cemented that not only was this a need that was real, but that it was the experience of many others. The chapel was almost filled to capacity (48 in total—yes she counted), with many families relieved to have a space where they could feel as if they belonged.
The seed sowed became an organisation, which had to move to the Holy Trinity Arouca RC church hall three months later and sensory-friendly Masses were introduced in South (2018) and Central (2019) Trinidad. At these Eucharistic celebrations, persons are invited into a sensory-friendly environment to facilitate those with sensory-sensitivity issues. Priests, deacons, lay ministers, choir members, volunteers, parents and children all now participate in a slightly adjusted space that permits shorter Mass times, less movement and, in general, welcome. The community added preparation for the sacraments to its plate from 2017 and is venturing towards other projects that are meant to support PWDs and their families, including plans for a respite and care centre, sensitisation projects, support groups. Bethesda registered as a non-governmental organisation, February 2020.
To donate to the Bethesda Community:
Account# 110000004479306 RBC Trincity
Cheques should be made to Bethesda – For Persons with Disabilities.
Email: firstname.lastname@example.org. Call Saira La Foucade: 297-8140.