By Claire Corrigan
A Mullingar family of six, with two children with autism spectrum disorder contacted Topic this week in the hope that shining light on their predicament might spur the HSE Disability Services into helping them.
Daragh and Gillian McAlister explained that their six year old daughter requires 24/7 care as she has a number of special needs. They say that while she was diagnosed with autism when she was two, she’s still on a waiting list for services four years later.
The Mullingar girl is prone to violent outbursts and screams for hours during the night. “Our older child (Kayla) has her challenges but has really stepped up and tries very hard. They are difficult from time to time and when things are tough for us, we find it hard to give them all the time and attention they require,” the concerned parents told Topic.
Toll on health
“Our six year old on the other hand is very difficult. She has difficulty communicating and is non verbal. She is a poor sleeper and can spend hours most days and nights screaming her head off for no particular reason. Our whole household is really struggling with the lack of sleep. This affects work, school, physical health, mental health, and even our ability to get out and about with our other children.”
It was clear that the parents are under enormous strain when Topic visited them at their home in Ardleigh Vale where they live with their four children, Avril (17), Dylan (13), Kayla (7) and Aimee (6).
The young girl also suffers from pica, which is an eating disorder that involves eating non-food items.
At two, Aimee was referred to the Springfield Centre for early intervention. “They said it would be a two and a half year waiting list so we went private and got her diagnosed,” the parents explained.
The condition has meant that Aimee has been hospitalised many times due to severe vomiting from putting objects in her mouth.
Daragh said the young girl was officially diagnosed in September of that year. “She went from having a couple of words to having no words, lining up objects, her behaviour, sensory issues – there were a lot of red flags,” he said.
The pair received help from Irish Autism Action (IAA), however the services they could offer were limited. “What Aimee really needed was psychology and psychiatric help whereas IAA provide physical therapy such as Occupational Therapy and speech and language,” said Daragh.
Loss of sleep
He pushed hard to ensure that a dietician was appointed to the area as Aimee is extremely particular about what she will eat so needs to take a supplement each day. “She’ll only eat hotdogs, some hams, roast potatoes as well as sweets.”
Aimee was seen by a psychologist twice when she was two years old but needs to be tested for an intellectual disability and insomnia. “She sleeps maybe three or four hours,” Gillian revealed.
The couple have not had a full night’s rest in several years as the young girl needs to be constantly monitored. “One night we put her to bed and when we came to check on her, Daragh just grabbed her by her foot before she fell – she was standing outside the window. She has no sense of fear.”
All the windows in the house have now been fitted with restricters. “If she got out the front door, she would walk into the road.”
“We are constantly on edge.”
Daragh said that communicating with their young daughter is extremely trying due to her inability to speak. “We don’t know what she is thinking or interested in. She likes the swings that were put in.”
The swings hang in a special extension sensory room that was completed just last week to cater to Aimee’s specific needs and contains various items to soothe the young girl. “Peter Burke TD fought hard for us and we received a grant from Westmeath County Council to build it.”
The sensory room contains two swings which Aimee retreats to several times during the course of the interview. “The swing allows her to have that movement. Otherwise we have to walk her in the buggy or bring her on a drive when she has a fit of crying and screaming.” The room itself is painted white and decorated with LED lights which can be dimmed in the evening time with the aim of helping her become more relaxed. “She likes mirrors and has different sensory toys. She likes to feel them on her feet and there’s fake grass carpet.”
Unpredictable
Aimee uses a commode, although the couple have tried many times to toilet-train her. “It’s hard because she can smear and we have to order special sleep suits to put on her at night time because you can’t leave her for a minute.”
The couple rarely leave the house due to Aimee’s unpredictable and often dangerous behaviour. “She went to the shop yesterday and she threw a box of sweets behind the counter. She does like her special needs buggy though.”
Daragh added that he is deeply concerned about his daughter’s future. “She is very strong. My shoulder is damaged from trying to restrain her for hurting people.”
The couple said the young girl requires more help from the HSE and that their last appointment with a paediatrician was in 2017. “We are over six months waiting and were promised an appointment for the first week of July to see a psychiatrist which was then postponed. That is our number one priority now. They are only one who could possibly help with the sleep issues. We’ve tried everything else.”
‘In crisis’
The couple are also asking for Home Help and to participate in the Share a Break Scheme, which allows children or adults with disabilities to enjoy a break each year. “We need to get these services for Aimee as soon as possible because it is not fair on her. Daragh’s work is suffering and Kayla’s school is suffering too. Kayla has anxiety, ADHD, dyslexia, dyscalculia and sensory issues.”
It’s clear the couple are completely dedicated to their young daughter as well as doing whatever they can to ensure the best possible future for all of their children. However, it’s also clear the pressure of the situation has placed a huge amount of stress on the couple and it’s not surprising that they describe their current situation as “being in crisis.”
The family praised Aimee’s school Mullingar Educate Together and said that Aimee’s teacher is fantastic. “Various family members have been brilliant but all have full time jobs and families of their own too. Daragh’s work are very understanding and great but many other companies might not be so good. We are in crisis now, our daughter requires 24 hour care as she is a flight risk. Our stress levels are very high,” they told Topic.
“We can’t go for holidays or get a break as even if we bring her to the home of our family she will scream yell and get physically violent. We dread every night time as the screaming, punches, headbutts, and kicking at all hours is draining every bit of energy we have.”
