“I was offered respite but what about respite for my daughter?”

A woman who is seeking supports for her ten-year-old daughter with complex additional needs spoke to the Leitrim Observer this week about how services for children like her daughter Maggie need to be made available to those living in Leitrim.
Jennifer Flaherty, who also has a son, explained that Maggie was treated for a very aggressive brain tumour as a baby. She was later diagnosed with autism and an intellectual disability, with the mother-of-two continuing that, in recent years, her mental health has deteriorated.
She said the local disability team referred Maggie to Child and Adolescent Mental Health Service (CAMHS) with Jennifer explaining that her daughter is "extremely anxious and doesn't sleep and gets up at 2am or 3am for the day, most days.”
She continued that Maggie is “covered in bruises” and injuring her little brother as well as her parents and that she's in “severe distress.”
She said that Maggie was “discharged even before CAMHS took her under their care because she has a moderate intellectual disability.”
“I was sent home with forms for respite to give us some relief but no relief for my daughter,” she said tearfully.
Jennifer explained that CAMHS recently launched the Intellectual Disability National Model of Service, a separate CAMHS service for children with an intellectual disability however it is not available in the family's region of Sligo/Leitrim/West Cavan.
“For Sligo, Leitrim and West Cavan; there is no date for a roll-out of this service and it's been a year. I know they are having recruitment issues but in the meantime, they will have to offer some kind of service to all the children they are denying it too.”
Jennifer, who lives in Drumshanbo and is a member of the group Families for Reform of CAMHS, said she was speaking out to help other families in the area who are experiencing similar issues.
“We are hidden and in our houses and being forgotten about and sent home to deal with it ourselves.”
She said the pressure is on parents to try and “push the HSE to get these services up and running. It's a lot to go out and tell your story over and over again to try and push them to get these services but it's being left up to us.”
Jennifer continued that Maggie has “headbutted us” and “pulled clumps of my hair out” but stressed that “we can survive all that but we cannot survive the fact that she is not happy and that there is something out there that could help her and we don't have access to it.”
She said that while school is “our saviour” but noted that with no special needs school in Leitrim, the little girl is forced to travel an hour and a half each way to school in Sligo.
“She's gone from before 8am until near 5pm every day and it excludes us from things like parent/teacher meetings, etc. that are in Sligo; everything is based in Sligo.
“We feel like we are being punished for where we live again. We are very lucky that in Carrick-on-Shannon, the child disability team is very good but they don't have the expertise to deal with what we need for Maggie; they don't have psychiatrists.”
She continued that the reason that the family moved to Drumshanbo was to benefit from having family around them for support and if they were to move nearer to an area with a special school, they would lose that much-valued support.
“This is a crisis for us in that we have nowhere to go for a psychiatrist for Maggie.”
She said that while Maggie can have “good enough days,” she experiences a lot of frustration and is “full of anxiety.”
“As a family, we are catering our whole lives around her because I can't get her to go into the car with me when I drop my son off to childcare and can't get her to leave the house to come for a walk; we live a very limited life.”
She added, “I know that CAMHS are disappointed themselves that they are having to turn children away. They knew Maggie needed help and tried to find somewhere for us to go but couldn't find anything.”
She continued that some families are “just being thrown off the waiting list without any explanation because they don't fit into a black and white criteria and are then being left to their own devices.”
The devoted mother described her daughter as “naturally happy, funny little child but she is so anxious that she almost won't allow herself to enjoy life.”
She said, “This is happening a lot and people don't know what's going on and that we are being failed and they need to know so they can get behind us so we can push for these services that should be there.”
She concluded, “It's not right that the HSE doesn't have a service there for very vulnerable children.”