Above: 4-year-old Bodhi
Cork mum-of-six Lenore Good writes a weekly column with the Evening Echo about her son Bodhi, who has autism. She also has a blog on Facebook called ‘Out in the Sticks With Six’ where, more often than not through humour and wit; she shares the challenges, joys and chaos of being a busy parent to six children (ranging in ages from 16 years to four months) including a four-year-old child with autism.
Bodhi, now four, was officially diagnosed by the HSE in May 2017. Lenore’s two-year-old daughter Indie is presenting with signs. Five of her children are waiting on services. Needless-to-say life for this Cork family is a challenge.
Lenore, whose blog has garnered over 7000 followers to-date, speaks to Mary O’Brien about her family’s journey with autism and the desperate lack of support that so many families like hers are faced with every day in Ireland.
“We reached out to Shine advocacy service for help and advice in November 2016, as the Health Service Executive told us we had a minimum wait of 18 months before Bodhi would be called to be seen,” says Lenore.
Bodhi displayed some signs of autism but not your ‘typical traits’. He had great eye contact, he was very loving but he had no interest in toys or play, no interest in initiating or participating in playing with any children and he would fire items across the room rather than interact with them. He communicated with his family by pointing at items.
In December 2016, Lenore and her husband Ian paid €500 to get Bodhi privately assessed. The psychologist was able to confirm autism and sensory processing disorder within an hour of interacting with Bodhi.
“The catch-22 is that each school has a different policy and some schools only accept a multi-disciplinary report from the HSE,” says Lenore. ‘However, with the private diagnosis we were at least initially able to get home tuition for Bodhi.
“We’re constantly fighting for our children’s rights.”
Bodhi’s HSE diagnosis was eventually done after a human rights and civil law solicitor in Dublin, Gareth Noble, stepped in. He had brought the HSE to court to challenge them on the delays for families all over the country.
This past September, Bodhi – who first began talking using phrases from his favrouite films – started at a new school just 10 minutes up the road. We’re blessed that it’s so close and it’s made the mornings a lot calmer for me; Bodhi and the two girls have transport to school, so I’m not running or racing anywhere,” says Lenore.
Now the fight starts all over again for Lenore and Ian and their two-year-old daughter Indie. “We’ve been told by the HSE that there is a three year minimum waiting list in 2018 for a child to be seen,” says Lenore. “Our case officer recently said that it would be February before someone could even have a conversation with us about Indie to see where we go from here. There’s no support for families…the only option we have is to wait or get the money together for a private diagnosis. A multi-disciplinary assessment today costs €1400.”
Attending school has made a big difference already to Bodhi’s behaviour. “We’ve seen a huge improvement in his speech over a matter of weeks,” says Lenore. “The past week Ian was hoovering and Bodhi said ‘it’s noisy’…a phrase he never would have used before.”
“I knew nothing about autism before flags were raised with Bodhi,” says Lenore, who feels very lucky that a Shine Centre for Autism was located near the family home. “We’d have been lost without them,” she says. “It’s a very lonely journey if you have nowhere to turn to or no one to ask for advice, which is the case for so many parents.”
“The fight is the biggest challenge,” says Lenore. “You’re absolutely drained from giving so much at home to your child and then you have to fight to get him assessed and into a school, something that he’s entitled to.”
The family is now facing a cost of €1200-€1400 to get Indie privately assessed and on the list to access services. Indie’s speech is delayed, she doesn’t respond to her name or play with other children and recently she has started compulsively lining things up. She has also started ‘spinning’ in circles, which Lenore explains is to do with self-regulating when her senses get overloaded or when she gets very excited about something. “Some children might flap their hands or squeal…every child has a their own way of coping with things.” Lenore’s advice to parents facing a similar challenge is to get in touch with Shine and make contact with other parents. Their new autismaware.ie website also has a lot of information.
“It’s a very lonely journey,” says Lenore “one that’s made less so if shared. People have a very stereotypical view of autism, which is why through my blog I try to explain why a child with autism might be behaving in a certain way. Even something as small as going for a haircut causes huge anxiety for Bodhi. To put it in perspective, Lenore explains “Imagine if I put you in a car and didn’t tell you where we were going or what we were doing and then sat you in a chair with someone coming at you with a razor or scissors…how do you think you’d feel?”
Up until Bodhi was three, Lenore was afraid to bring him out in case he would have a meltdown and she wouldn’t know what to do. “I couldn’t communicate fully with him. If I left the room or was out of sight he’d become hysterical with worry and anxiety. I’ve seen a massive difference in him between the age of three and four. His communication and comprehension has improved and I’m more confident now, as I know exactly what he needs even if he isn’t speaking.”
Bodhi suffers from severe anxiety issues. “If he was in the back of the car and I got out to get petrol, he’d have a meltdown,” says Lenore. Just one simple action like this sets off a domino effect, which affects Bodhi and his family for the rest of the day.
“I was at a conference recently where a professional said that with the thousands waiting to be assessed in Ireland, the statistic of people with autism could be as much as 1 in 29,” says Lenore. “It was also mentioned that something like 30 per cent of teens in schools are struggling with mental health issues, 10,000 of whom were waiting to be seen in 2017 just in the Cork and Kerry region alone by CAMHS, the HSE-run Child and Adolescent Mental Health Services.
“It’s very frustrating, as all of the emphasis is on early intervention if these children are to be helped,” says Lenore.
So where is the help?