2/26/2023 0 Comments Classical guitar shed ryan inglis![]() Discussions ensued about getting work online, and ensuring young people were still able to make educational progress in spite of the national situation. Parents were sent timetables and expectations were communicated. Schools reacted quickly to the questions surrounding exams. Essentially paraphrased by Children must continue to learn, global apocalypse notwithstanding. Once the initial cacophony had settled into an urgent background buzz, a key theme emerged in the national conversation - education. He needs costly round the clock care, expensive daily medications to keep him alive, and let’s face it, he’s really rather lucky to be here at all.īack to lockdown. My boy is a drain on the system who, due to circumstances entirely beyond anyone’s control, is unable to contribute anything of any worth to society. And yet the message from all sides is very clear. He’s given me skills in advocacy, and a fighting spirit to speak up for those who have no voice. He’s shown me how to love beyond what I knew was possible. I have a son who teaches me humanity every day. Suggested reading Why doesn't my son matter? They’re reflective of a carefully constructed, economically-driven system in which people’s worth is reduced to what they are able to contribute on a purely fiscal level. But these questions represent something bigger than people’s one-off awkward foot-in-mouth moments. My son is frequently the subject of questions which leave me aghast: When are you going to put him in care? Does he go to school? What’s his life expectancy? Will he ever talk? Frustrating? Yes. Rightly or wrongly, I’ve grown used to the cultural narrative surrounding disability in 2020 Britain. Our mundane everyday comprises uncontrolled life-threatening epilepsy, severe learning difficulties, autism, communication challenges (at 12 he remains entirely non-verbal), excessive hyperactivity, and complete dependency on the adults around him to keep him safe. My son was born with a rare chromosome disorder which renders him severely disabled and needing round-the-clock care. A whole summer holiday’s worth of time that I’ve been expected to be teacher, carer, parent, cheerleader, motivator, expert in all things SEN, and advocate extraordinaire for basic support which should have been readily available, but in reality wasn’t ever there to start with. ![]() ![]() But today marks almost exactly six weeks since lockdown began. Navigating our current culture, and its associated systems with a severely disabled child isn’t exactly energising. The kind of bone-dragging, brain-fogging tired which renders me on the brink of functional. ![]()
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