St Lucy is the Catholic patron saint of a host of workforce groups, among them labourers, peasants, writers and salesmen but most notably in my mind, she is the patron saint for the blind.
And it is at St Lucy’s School in Sydney that parents can see how a light can be shone onto the lives of their disabled children. The emphasis within the school has gone from educating children who are sight impaired to predominantly those on the autism spectrum and there is much to admire in the philosophy and dedication intrinsic within the school culture.
The principal posed a question that many parents have grappled with – Mainstream is ‘lovely in theory but [does it work] in practice?’
The professionals speak quietly and with resolve about the ethos underpinning the school’s values and beliefs that shape their education practises. There is no question that they are a dedicated band determined to make sure that all the children who attend the school get the best possible educational outcomes. The principal talks about ‘loving a child’ for who they are and helping them to be ‘secure’ and confident to have a go at everything. The teachers are very upfront in acknowledging that they are preparing the children under their care for a mainstream education, for life in the ‘real’ world.
The principal posed a question that many parents have grappled with – Mainstream is ‘lovely in theory but [does it work] in practice?’
The parents interviewed for this ‘Attitude’ programme have often arrived at St Lucy’s School after a painful encounter with the mainstream education system. The struggle has defeated them. It is sad to see parents bowed down with the trauma of combating an education system that doesn’t appear to value their child. Whichever side of the Tasman you live on – this is a constant in the lives of parents supporting a disabled child within their family.
One comment for me stood out. A parent said, ‘We are fragile. We need care the same as our children need care.’ That comment cuts to the nub of an important issue – often overlooked or ignored in the wider dialogue. Parents are expected to carry on, year in and year out often within an indifferent society and with little to no respite, supporting a child they adore but who makes excessive demands on their time, their energy, their love, their patience. At times it seems that no one cares.
This is an issue that this ‘Attitude’ episode about St Lucy’s faces, delicately, with sensitivity and honesty.
It is about how do the Dads cope with having a child with a disability and the impact on their lives as a male, as a husband, work colleague and friend. I don’t know how blokes deal with this issue. What I do know is that many relationships fail. I know about the stress associated with bringing up a disabled child within a family and I know that so often the blokes don’t talk, don’t say anything about their feelings to other men or to anyone for that matter.
In the St Lucy’s documentary the Acting Principal at the time, Warren Hopley spoke to camera about an incident in 2016 where a father with two children attending the school took his life along with his wife and children’s lives. This was a profound event that impacted on all the families attending the school, the staff and spread out into the wider community. Such despair. Such hopelessness. Such a tragedy.
How do men cope? Often women talk to each other, join on-line social media groups, create deep long lasting friendships with other women in similar situations. For many men it seems they are isolated, not able to voice their feelings, unable to articulate their fears, and so it is bottled up.
Years ago a number of men, my husband Barry included, all of whom had children with Down syndrome got together and formed an indoor cricket team called the Tri-21s. It was an in-house joke, but slogging a cricket ball around on a pitch followed by a beer or two seemed to give permission for a few internal barriers to be lowered. It meant that they didn’t have to explain their home situation to anyone and could just be one of the guys. It was a healthy thing to do. I don’t know if the men shared much over their brews, but it was the opportunity for some disclosure in a trusted environment.
I do have questions though – how do children make that transition from a segregated setting into a mainstream environment?
When researching this opinion piece I looked to see what organisations if any are out there to help families ‘survive’ some of the huge overwhelming-at-times challenges we face. There aren’t any that deal specifically with disability related matters. I can’t help think though that honest talking does help. Trusting someone enough to get that first sentence out is a massive first step – but it can make all the difference. Often I find that someone is just waiting for you to make the first move.
As for St Lucy’s – even for a hard-line mainstreamer like myself, you can’t help but be moved by the commitment of the teachers, volunteers and parents in the school. A programme like this shows us all that many of the issues parents grapple with are universal and we can learn from each other. I do have questions though – how do children make that transition from a segregated setting into a mainstream environment? How do they and their families survive without that wrap-around pastoral care? Are faith-based schools able to offer more to families?
None of these questions take away the good that St Lucy’s does on a daily basis. It leaves me with one more question.
Wouldn’t it be nice to have the support and light from St Lucy’s shine on every child in in every school regardless of their individual needs?
