Mother desperately appeals to government for help with adult autistic son – – Our News, Your Views

Mother desperately appeals to government for help with adult autistic son

Image source: RTE

Loving her youngest son, Sam, Mary Marmion, 67, is like so many Irish mothers.

“When he is in good form, you wouldn’t want to be with anybody else in the world,” Mary told Prime Time, reported RTE.

But when Sam is out of shape, Mary worries about her own safety.

Sam O’Sullivan is autistic, has an intellectual disability and also has epilepsy. He is now 27 years old and still lives in his house in Kilcoole, County Wicklow. Although he has few words, Sam does not speak and this inability to communicate affects his behavior.

“He can get very, very frustrated if he’s not being understood and how he expresses that is in his behaviour, which can be very aggressive,” Mary said, according to RTE.

Since he turned 18, Mary has been trying to find long-term housing with full-time support for Sam.

The closure of day services during the pandemic meant that Sam’s behavior deteriorated. The lack of a structured schedule with proper management of his behavior increased his daily levels of stress and frustration.

Sometimes this aggression leads to self-harm: Mary said Sam poked his head through windows, mirrors and plasterboard walls, and on one occasion even through a storefront.

Two years ago, weekly respite was offered as an interim solution while long-term care was organized.

But respite isn’t the same as a structured program—it’s unstructured and doesn’t offer anything like the range of activities and therapies that Sam needs.

This lack of structured support led to increased frustration for Sam and therefore increased aggression. In recent times, Mary has also had to call the gardaí because she was very afraid.

An accident last year resulted in serious injuries. Mary told Prime Time how she was driving with Sam sitting in the back seat as usual and, “for some reason, he just lost it”, reports RTE.

He kicked the space between the seats and hit Mary in the head.

She didn’t realize that she was seriously injured until the end of the week, when she went in for a routine eye exam. The optician told her that she couldn’t go anywhere because she had a detached retina.

In February 2021, Mary reached what seemed like a turning point when Wicklow County Council offered Sam a home.

After much discussion and countless meetings, HSE has agreed to fund the services Sam needs, while a service provider has agreed to take over the management of the home with the appropriate support staff. Two other compatible young people would complete the family.

But more than a year later, Sam is still home and the house is empty. Mary said that the promised times have come and gone.

In a statement to Prime Time, HSE said that while it could not comment on individual cases, it was aware of the delay in the opening of the house by the service provider, Sunbeam House Services.

It said it recognized the discomfort this delay caused families waiting for a place in the house.

Sunbeam House Services, HSE said, “has recently reported challenges with the recruitment of necessary staff to facilitate the opening of this house”, reported RTE.

“As a result, we are exploring all other options to progress the opening of this house in 2022,” reports RTE.

For its part, Sunbeam House Services told Prime Time that it deeply regrets not being able to launch this service and provide accommodation to customers in need.

According to RTE, it said “We fully accept the concerns and expressions of dissatisfaction being expressed by the families,” noting that it was unable to recruit suitably qualified staff despite targeted recruitment drives.

“We are in ongoing discussions with the HSE and we have met with the three families involved, with a view to finding a resolution to this entirely unacceptable delay as soon as possible in the near future,” reported RTE.

Meanwhile, Mary told Prime Time that she felt desperate, but also very angry. Sam is home with her every other week and doesn’t understand what is happening to her.

He gets frustrated, and then we get into the spiral again,” she said, reports RTE.

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