MOTHER’S FEAR FOR SON
“I feel like I’ve been left to cope on my own. I’ve learned more from Google about my son’s health issues than anywhere else.”
The words of Iveta Kaniki whose son, Djino has ADHD, Tourette’s syndrome, Chronic Motor Tic Disorder and Oppositional defiant disorder ( ODD).
The mother of three, originally from Latvia but living in Cartron for the past 12 years says she is desperate to get the right kind of help for her son, but feels like every day is a battle.
9- year old Djino was on a waiting list for the HSE’s Child and Mental Health Services ( CAMHS) for more than a year. The service is under severe pressure and announced last week that only ‘ priority patients’ could be treated. It said just 87 vulnerable children out of a total waiting list of 348 have been identified as priority patients. Iveta fears it will now take even longer for her son to be considered for CAMHS.
She says that Djino was given an appointment date in January but it clashed with a family court hearing that she could not miss. She stresses: “I got my solicitor to send a note to explain that we would not be able to make that date. I called them and was begging down the phone to please change the date.”
But Iveta says she was told it was impossible to defer and that there could be no flexibility and that despite waiting a year, her name would now go to the back of the list once more. She was devastated, particularly because her son is not coping any better. She explains: “School is a real problem for him as his tourette’s leads to cursing and rude gestures which he has no control over. This is very upsetting the other children and parents. At home he talks about wanting to die. He says my life is so messed up, he does not want to live. He has started to get very abusive, hitting and biting me. He has broken windows and has been uncontrollable. I’m walking on eggshells and I’m exhausted. We need help. I cannot manage and more importantly my child cannot manage.”
Iveta says from the beginning her experience of the health care system with regard to Djino has been abysmal. When he was first referred to a paediatrician, it took six months to get an appointment despite Djino suffering from extreme daily headaches and developing facial spasms. Eventually he was sent to Temple Street where he was diagnosed.
Iveta says it was a fight to get him access to a special needs assistant and other therapies in school. Eventually following a National Educational Psychological Service ( NEPS) assessment Djino got an SNA.
Other mothers have told The Sligo Champion that there is a serious issue with NEPS in the region with huge waiting lists. Indeed Sinn Fein’s Chris MacManus revealed just weeks ago that there are 12 Sligo Schools with no access to National Educational Psychological Service.
“Since the number of referrals for assessment are limited per school, many parents are forced to pay privately for the assessment to be carried out,” he said.