PARENTS STEP UP AUTISM ACTION
Parents of autistic children have stepped up their campaign for better services in the North West for their children.
These local mothers formed a group called ‘ Our Voice for their Future’ and are part of the national campaign group ‘ Enough is Enough.’
The group launched a petition outside Sligo County Council headquarters at Riverside yesterday ( Monday) calling for better Mental Health services for children.
They will march on April 3rd from outside the Autism Services on Mail Coach Road at 10am to the Child and Adolescent Mental Health Services ( CAMHS) office at Nazareth House on Churchill.
“We’re not going away. We need change and we need it now,” said Fiona Gallagher at the launch.“We need better services. Enough is enough. We can’t keep begging and crying and being exhausted as parents. with no help.”
WHEN Leah Donlon started primary school, her mother Jade was called in every other day because Leah was unable to sit still and learn like the other children. Her disability became more apparent the more she tried to fit in.
“Leah would run around the classroom, run in and out of the toilet, have big meltdowns, temper tantrums and display other types of disruptive behaviour,” explains Jade, who would dread going to collect her daughter every day as she faced fresh complaints from the school. The school asked Jade to have Leah assessed.
Leah was not entitled to a Special Needs Assistant or a resource teacher as at the time in September 2015 she had no official diagnosis for her disability. This is because, Jade says, the HSE locally failed to diagnose or treat her daughter.
“As a mother and a child care worker, I knew from when Leah was 18 months old that something was not right especially with her emotional development. I went to seek medical help but was sent on a parenting course which made me second guess my own judgement. I thought I must be doing something wrong as I believed the professionals,” says Jade.
Leah started creche but would not interact and was hitting out at others.
At three years of age, Jade brought her to the GP who said he would refer her to Child and Adolescent Mental Health Services in Sligo ( CAMHS.)
“I thought she was referred but we never got an appointment.”
It was when Leah started school that her disability really came to the fore.
Jade says: “In full time creche she had one creche worker who would concentrate on Leah and she got on really well there for a while. Once she started school things went down hill fast. So I went to the GP again and got a second referral to CAMHS. They emailed my GP back and said this time the waiting list was closed and that they did not feel she needed to be seen by them.”
Losing faith in the system and patience, Jade made an appointment with a child psychiatrist in Dublin and paid € 250 to have Leah assessed privately. Leah was then diagnosed with ADHD, Aspergers and Oppositional Defiant Disorder( ODD).
Following this diagnosis in February 2016, Leah once again referred to CAMHS but accord- ing to Jade she has still not been seen or treated.
In fact, Jade says the last time she personally contacted CAMHS, she was told that Leah was not even put on a waiting list.
This is despite Jade having received a letter saying Leah had been referred to CAMHS.
She adds that there is something very wrong with the system when a clearly troubled child can not get a diagnosis or a referral that translates to an actual consultation with a medical psychiatrist.
Jade, like so many other parents, took matters into her own hands because she knew her daughter best.
Once diagnosed, Leah did get access to a resource teacher who spends one hour daily with her in school.
But this would not have happened were it not for Jade’s insistence on getting support and that all important diagnosis elsewhere.
As she says: “I am just starting out on my battle and I know if I want to get Leah any help whatsoever I will have a fight on my hands. In my heart I knew she needed intervention as early as possible. She is six now. I do not want my child to deteriorate further. She is still finding it difficult in class. I’m still being called in.”
Jade who lives on the Strandhill Road concludes that she has lost all faith in the HSE system.
“If I need help or support for Leah, I’m turning to other parents in my position. We lean on each other, we have to,” she says.