‘Everybody was in the same storm, but different ships’

By Mary Dennehy

Living in Saggart, Amanda’s nine-year-old son Luke has autism and an intellectual disability, and attends a special school five days a week.

Amanda is among a number of parents who have expressed their worry over the non-opening of special schools, a situation which she believes is impacting negatively on Luke, who is pre-verbal.

Luke Fox enjoying a walk during lockdown 1

Luke Fox enjoying a walk during lockdown

Looking back to the first lockdown in March of last year, Amanda said: “We all had to get up and get on with it, we had to stay safe and just dig in.

“Everybody was in the same storm, but different ships.

“However, when Luke went back to school safely in September, we were delighted with all of the [safety] protocals.

“Luke was doing brilliant, he had his routine back and was sleeping through the night again.”

However, with no school since Level 5 restrictions were re-introduced after Christmas, Amanda and husband Stephen are anxious about their son’s progression.

Luke Fox with mam Amanda 1

Luke Fox with mam Amanda

“When parents heard the schools were closing again, the anxiety, worry, deflation kicked in”, Amanda told The Echo.

“I’ve noticed a huge difference with [Luke’s] confidence [since his school closed].

“Luke is not fully toilet trained and his school has been helping me with that, they play a very important part in teaching Luke lifeskills.

“Luke has also been learning to sit for a period of time, which will help with his concentration but all of this is on hold... his life is on hold.”

According to Amanda, Luke, who is adored by his two older brothers, is a very happy and sociable boy.

Luke Fox 1

Luke Fox

However, when there’s no school or activities, such as horse riding and swimming, Luke can become aggitated – and has very high energy levels for indoors.

“Luke has no independent time, he’s in the back garden or house with me or out walking with me”, Amanda said.

“I managed to get Luke walking everyday, which is really positive but I have struggled trying to make a routine for him.

“I’m quite sociable myself and [before the Covid pandemic] I brought Luke everywhere with me.

“However, I don’t believe I’m enough for him, I know I’m the best person to be his mother, but at the moment I also have to be his occupational therapist, his speech therapist, his play mate...

“As a mother of a special needs kid, you’re hard on yourself from the moment you get up until the moment you go to bed.

“You’re constantly asking yourself, am I doing enough?”

Since Luke, who loves basketball and the beach, was diagnosed with autism, Amanda has linked in with and supported parent-led groups.

Luke has built his own community connections too and in May took on a 100k challenge for front line heroes and in November walked the distance to the North Pole to raise funds for PPE for his school.

Amanda, who believes the HSE, Department of Education, schools, parents and community groups all need to work together, was also involved in the development of a sensory trail at the Fettercairn Horse Project.

Describing the Government’s announcement to re-open schools on a phased basis across February and March as “vague”, Amanda said: “The longer this goes on, the more divide between SNAs, teachers, parents, which is terrible.

“Our children are regressing, they need routine.

“Luke is an absolute hero of a boy and he deserves better.”

In a comment issued on its website on January 19, Forsa, the Trade Union that represents SNAs, said: “SNAs and others working in SEN (special educational needs) provision are more aware than most of the urgent need to begin the resumption of services.

“It remains Fórsa’s belief that this can and should be done in ways that underpin the safety of students, staff and others during this awful pandemic.”

Talks between Government and teacher unions on the re-opening of special schools resumed earlier last week.

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