The moments that mean everything

By Amanda McGuinness - Little Puddins columnist

RAISING an autistic child with ARFID can change the way a family experiences something as ordinary as food.

Avoidant/Restrictive Food Intake Disorder, or ARFID, is a recognised eating disorder, within the same diagnostic family as anorexia nervosa, but importantly, it is not driven by concerns about weight or body image. For a child with ARFID, eating can feel frightening, overwhelming or sometimes physically impossible.

For parents, there is another side that is rarely spoken about. The worry and fear of if their child stops eating altogether.

You worry about nutrition, growth and health. You worry about school trips, parties and celebrations. You wonder whether people will understand, or whether your child will be judged for something beyond their control. You carry the quiet hope that the world will meet your child with compassion rather than expectation.

My young son Max has ARFID, and we have been extraordinarily fortunate in the support he receives at Knockrooskey National School.

Over the past year, his incredible SNAs and his outstanding teacher, Jesse Kennedy, have worked patiently alongside Max, helping him feel safe around food without pressure or expectation to eat.

Recently, on Max’s birthday, I was reminded just how much that matters.

Through the patience, understanding and care of Jesse and his wonderful SNA team, Max felt comfortable enough to fully share in a celebration centred around a food he cannot eat. He smiled as his classmates sang 'Happy Birthday' and happily blew out his candles, with the people who have spent the past year helping him feel safe around food right there beside him. For our family, that moment meant far more than they may ever realise. To me, it meant everything.

Sometimes, progress is feeling safe enough to be part of the moment.

Read Amanda's Little Puddins column twice a month in The Connaught Telegraph or visit her Little Puddins website.