A determined Ballivor family, who have been through the mill looking for services for their son with autism, have started a campaign for a dedicated unit for adults with autism in Meath.
Sharon and Seamus Connolly are determined to get support from other parents of adults and children with autism, to get a unit up and going, because of the lack of suitable facilities for adults with autism.
Seamus and Sharon have had a tough journey with their adored son, Barry - initially to get a diagnosis when he was younger and to get services for him as a child.
He is now 27 and as an adult, they feel there are no suitable facilities for him. He attends Rehab in Navan, but Sharon points out that it is not really suitable for Barry's needs.
“The unit in Navan caters for people with physical disabilities, various intellectual disabilities, as well as autism.”
Because people with autism have sensory issues and noise and lighting can have a hugely detrimental effect, his parents feel it is not suitable.
Added to that, Barry witnessed a tragic incident four years ago, after which his health deteriorated and he developed severe depression, but his family have had huge difficulties accessing help for him.
“It is bad enough getting services and transport when they are young, but when they come to 18, it is terrible. They fall off a cliff. There are no suitable facilities,” says a distraught Sharon.
She is so worried and concerned for Barry, she and Seamus have set up the South Meath Autism Group, with a view to setting up a specialised unit in Meath for adults with autism.
“We visited one in Tullamore recently and it was wonderful. That set us to thinking of setting up a similar facility in Meath,” Sharon explains.
They have identified a premises and are trying to persuade the HSE to come on board.
“We are fund raising and will help to supply equipment to such a facility,” Seamus says.
For the Connollys getting the right services for Barry has been a constant fight.
Barry was born ten days early after a difficult pregnancy but was a perfect baby and for the first year or 18 months seemed to be reaching all his milestones quite easily.
However, at 18 months, the public health nurse noted he was a bit slow to talk.
A check a few months later showed the same and he then underwent a raft of tests.
“They first thought he might have hearing difficulties and then he had a brain scan, an MRI and eventually they just said he had a speech and language delay.
“After a long wait, he eventually got to see a speech and language therapist.”
That therapist was Caroline Reel and Seamus explains that she was the first person to mention autism.
“She noticed he had many of the characteristics of autism and we followed it up from there. Maria Walsh, one of the top experts in the field confirmed the diagnosis,” he said.
This in itself was a huge relief, but over the years he found they had to fight all the way for services.
They met many different health professionals over the years, and have forgotten many of their names, but Sharon remembers one who told her that here son would never amount to anything, would never speak and would suffer temper tantrums.”
The Connollys were not prepared to accept that and started their battle for Barry's education.
“Before his diagnosis of autism he had started primary school but it had been a nightmare as they didn't know how to deal with him.
“We were then offered two hours a week home tuition but we had to find the tutor ourselves, but sure we didn't even know what type of teacher we needed.”
Eventually they got him into a speech and language unit in Trim which worked very well for him and later he attended the autism Scoil Mhuire in Navan which was “absolutely brilliant.”
He then attended secondary school in St Ultan's in Navan where he sat his Junior Cert.
“All though his years at school, there was the fear that he mightn't get a place the following year, or whether or not he would get transport. At one stage, I used to drive to him Scoil Mhuire in the morning and go back and collect him in the evening. The following year, he was given transport,” Sharon recalls.
While things were difficult while he was a child, reaching adulthood was like falling of a cliff, according to Sharon.
The only facility currently available to him is Rehab in Mullaghboy in Navan.
“It is really not suitable for somebody with sensory disabilities. It caters for people with every kind of disability.”
The real turning point came four years ago when Barry witnessed a tragic incident that left him traumatised and depressed.
“It has been downhill from there. He was afraid he was going to die, that we would die and he didn't want to get out of bed. He was very depressed and was given anti-depressants and sleeping tablets.”
Although Sharon has begged for help such as counselling, there has been no further assistance.
It has been so difficult for the family since he turned 18 that the couple have now taken matters into their own hands.
They visited a unit for adults with autism in Tullamore recently and were delighted with that they saw.
“The staff were specially trained in autism. It is a wonderful facility,” Seamus said.
They have now set up the South Meath Autism Group and are urging parents of adults with autism as well as parents of children with autism (who will one day need the facility too) to get behind their campaign for an adult autism facility in Meath.”
“If the HSE would provide a premises and staff, it would be ideal.
“We have started fund raising and would provide equipment,” Seamus says.
He points out that a premises like an unused crèche would be ideal. Sharon said “I would do anything for Barry, because he has no voice and I am sure there are many others feel the same way about their children.
“ We want anyone interested in establishing this unit to contact us,” she said.
The CONNOLLYS can be contacted through the South Meath Autism Group Facebook page or by email at firstname.lastname@example.org or by ringing Sharon at 0861761423 or Leanne at 0860311285.