Tuesday 16 January 2018

'I feel she's slipping further away from us' - Mum of girl (10) with autism left heartbroken as child's speech deteriorates

Sisters Gracie (left), Lucy, (middle) and Carly (right) Credit: Family photo
Sisters Gracie (left), Lucy, (middle) and Carly (right) Credit: Family photo
Catherine Devine

Catherine Devine

The mother of a ten-year-old girl with autism has spoken of her heartbreak at watching her child's speech suffer due to a lack of therapist support.

Genevieve Fagan said that the scarcity of speech and language therapists across the country has left Lucy unable to communicate, which can leave her frustrated and prone to aggressive outbursts.

Lucy began to have noticeable problems with her speech at 18 months old, her mother told independent.ie.

“It was a long battle with the HSE to get Lucy diagnosed. When I first went to a consultant in Portlaoise I was told that it was just my anxiety,” she said.

On receipt of a letter from the HSE which advised her to take a parenting class for those with autistic children, Genevieve said she was “outraged”.

When Lucy was seen to by another consultant, the little girl was referred to a psychologist at an early intervention centre in Laois.

Lucy (middle) with mum Genevieve and sisters Credit: Family photo
Lucy (middle) with mum Genevieve and sisters Credit: Family photo

However, the family was told that she would have to wait a year to be seen because the psychologist was on maternity leave.

“There’s nobody at the school age team in Laois to help families, posts still haven’t been filled,” said Genevieve.

“Lucy would have been able to cope with everyday things and stay in a mainstream school if the help had been available to us."

She said that Lucy is now non-verbal and becomes aggressive out of frustration. Lucy is getting bigger and stronger every day and Genevieve said that some weeks she is "covered in scratch marks and bites".

Genevieve said that the family would be lost without her daughter's "fantastic" school, including her teachers and special needs assistants who "go above and beyond for Lucy".

"She was able to communicate in junior and senior infants but she has completely regressed because of the lack of help available to her. She could have been helped but it’s too late now.

“My heart is absolutely broken. Despite the work her school do and the work we do at home I feel she is slipping further away from us and more into her own world.”

Genevieve said that the number of families on waiting lists for speech and language therapy in Laois alone has doubled in the past four years to 400.

“There is no-one there to help the families. There is no psychologist or psychiatrist for children with special needs and there is also no behavioural therapist for Laois,” she said.

Recent HSE figures show that 8,580 people are waiting for initial speech and language treatment across the country.

Meanwhile, figures for those seeking an initial assessment with a speech and language therapist paint an equally bleak picture - with over 13,380 people countrywide languishing on waiting lists.

Inclusion Ireland research shows some families are incurring a serious financial burden, by having to pay for services they cannot obtain through the public system.

Genevieve said she has already spent over €1,000 on a private psychologist for Lucy.

“We try and get private therapy for Lucy when we can afford it. At the moment she’s not really reacting to it, she just wants to be left alone.

“Her therapists said that she should have gotten the help in the beginning to stop her from regressing so much. Because she wasn’t getting help, school became too much for her, and she completely withdrew into herself.”

Genevieve has also been active in the launch of the Autism Awareness Safety Plan to help families protect their autistic children.

The plan provides detailed information to local gardai about children with autism such as their communication skills and how to approach the child if found.

A spokeswoman for the HSE said the Public Health Service currently employs 586 Speech and Language Therapists and also indirectly supports a number of Voluntary Agencies who employ Speech and Language Therapists.

"These staff see and provide services to approximately 21,000 patients per month.

"The Primary Care and Social Care Divisions are addressing waiting lists in Speech and Language therapy as a joint project including a detailed analysis of waiting times and resource deployment across the country. 

"There is a €4m allocation within the 2016 Service Plan to facilitate the recruitment of Speech and Language Therapists to address waiting lists as part of the overall Speech and Language Therapy waiting list initiative within Primary Care and Social Care.

"The allocation provides for an additional 83 posts.  Funding has also been provided in Disability Services for Speech and Language Therapists including 27.5 SLTs in 2014, 35.5 SLTs in 2015 and 25.5 SLTs in 2016."

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