'We’re not at breaking point, we’re past it' – Mother of autistic children speaks out about lack of support
A mother of two autistic sons has spoken out about the realities of being a full-time carer with little to no support from the government.
Trish Flood has two sons: Harry, ten, and Gavin, seven, with her husband Don. Trish gave up work to care for Harry full-time when he was diagnosed and she has watched the supports available get cut time and again as she struggles on.
“You quickly realise after your child is diagnosed with a disability that you’ll have to do all the work. You might get the occasional block of occupational therapy or speech therapy, but then they give you exercises to do at home and that’s it – it’s all up to you.”
Trish went private for Gavin’s diagnosis while he was on a HSE waiting list when he was two-and-a-half. She needed him diagnosed by the HSE to access certain supports, but this did not come through until he was four.
Trish says it can be incredibly isolating when the only depictions of autism in the media are of high-functioning people that don’t represent the reality for everyone.
Some autistic children cannot speak at all, and the majority have problems communicating; the frustration of not being able to get your thoughts across can lead children to be aggressive and anxious.
“People see the media depictions of people with a lot of support, and then they see a non-verbal child or a child having a meltdown and they think ‘well you must be doing something wrong.’ They don’t see it as a disability; they see it as bad parenting.”
Trish appreciates the value of positive images but she says parents are underprepared to deal with how hard it is to be a carer. “I would always tell people to find other parents because they will be your biggest support. Thank God for the Facebook groups and the advice you can get from other people in our situation.”
She has had to fight for the supports she has: Harry’s Domiciliary Care Allowance was cut when he was six. Trish joined an organisation called DCA Warriors, a group of carers campaigning for reform who eventually managed to restore the DCA to people who had lost it.
“You can make a difference if you join together. You really have to be your child’s voice and do whatever you can to get them what they need.”
“The people I’ve met with disabled children are phenomenal – they’re the best people in the world. But the work we do isn’t recognised. We in this country encourage everyone to look after themselves and their mental health but we expect carers to just get on with it.”