Wayne McSweeney only agreed to take part in a programme for parents of adolescents with intellectual disabilities because he thought he might finally come face to face with the right person to give out to about the lack of State services for families like his.
“We had an idea of what kind of support we needed but we didn’t get it,” he says from his home in Midleton, Co Cork. A singer/songwriter with the Street Corner Messiahs, two of his songs have just been selected for consideration for the 2021 Grammy nominations.
Many of the professionals he and his wife Jen have encountered with their son Christian, now aged 15, do their best, he acknowledges, but they base their practice on academic models, use obtuse language and have limited time to work with families. Ideally, he suggests, they should be spending the first six or eight weeks getting to know the family and the child, to see the child at their worst if they can.
By Wayne’s own candid account, on Christian’s worst days, “he was like something from the pit of hell”. At times “it looked like my poor wife was in domestic violence because of the injuries she would sustain – he’d pull her hair, bite her, scratch her”.
But in hindsight, Wayne is in a way thankful for the lack of services because it forced the couple to harness their own resources to cope with their non-verbal son, who has severe autism but also “epilepsy, bi-polar, dyspraxia, dyslexia and a million other things we don’t care about”, says his father.
“We waited 3½ years for a social worker and when the social worker came, we couldn’t even remember what the referral was for. We had given ourselves the permission to be the experts in his behaviour.”
Wayne was understandably sceptical when Marguerite Lehane and Eleanor Kent of the CAMHS Intellectual Disability Service in Cork first approached him to take part in a pilot of the latest programme from the charity Parents Plus. Designed for those parenting adolescents with an intellectual disability, it is one of the first of its kind in the world to prove its effectiveness through a randomised controlled trial.
But although he went in to complain, Wayne says he came away with a gift he could have never envisaged.
In spending three years devising this programme, through collaboration with many parents and organisations, Parents Plus wanted to support what its chief executive John Sharry describes as a “high-need, under-served” group of parents.
Raising a child with an intellectual disability is challenging enough, he points out, but with adolescents, “you have all this extra aggression and sexuality; they’re not cute any more”. This, he says, can make socialising very difficult for families.
What’s more, “often services are cut off from them at this point, or they provide them with materials that are suitable for young children because they don’t know what to do with adolescents”.
The most important thing is to reach out and support them
Sharry, adjunct professor at University College Dublin’s school of psychology and Irish Times parenting columnist, talks of the “unheard challenges” families have to cope with. For example, these teenagers’ sexual behaviour can be very difficult for parents to manage and they can struggle to protect younger siblings from witnessing it. Parents may be too embarrassed to talk about this to anybody, even professionals, for fear it might be regarded as a child protection issue. “Parents would experience great depression themselves,” he continues. “They would be suicidal at times, homicidal at times. The most important thing is to reach out and support them.”
Parents Plus believes that expertise sharing among parents in similar situations is an invaluable resource. Yet within State services there is almost no empowering of parents to support each other, says Sharry, although many parent-led, voluntary organisations encourage it.
“Professional services tend to be very individual focused. Parents spend most of their time fighting those services and it adds to their stress.” It’s not always like that, he acknowledges, “there are some great individuals within those services”.
However, the ambition of this new programme was as much to encourage services to deliver group support, as anything else. There is also a pressing need to engage fathers.
While Lehane and Kent in Cork were persistent and “hugely successful”, he says, in signing up men, as was a Donegal group run by two male social workers, few of the other 22 services involved in the pilot succeeded in enrolling fathers, “despite my imploring to do that”. Just 11 per cent of the 277 parents involved in the randomised controlled trial of the programme were men.
In comparing one half of the parents who had completed the programme with the other half on a waiting list for it, independent researchers from Trinity College Dublin found significant improvements in parenting practices, problem behaviours, and in parental satisfaction and self-efficacy, while parents moved closer to goals they had set themselves.
In conclusion, the researchers, led by Charlotte Wilson and Suzanne McMahon, said: “We are seeing positive changes in several domains including adolescent behaviour, family relationships, and parental wellbeing. Parents put this down to enhanced skills through getting advice and information from other parents, from expert facilitators and from the content of the programme.”
There are things that go along with raising a child with intellectual disability or autism that a lot of people would be embarrassed by
Wayne was relieved when he and Jen walked into the room for the first session to see that he wasn’t the only man. Within an hour, members of the group felt comfortable with each other as it became clear they had shared experiences. “As the weeks unfolded, we could say things we thought we could only say in secret and it was really nice to sit in a group with people who wouldn’t judge you. There are things that go along with raising a child with intellectual disability or autism that a lot of people would be embarrassed by.”
A testament to the success of the programme was that the parents decided to stay in touch, setting up a WhatsApp group to facilitate this.
“It is nice to have that contact because a number of them are at that place where we’re heading with Christian,” says Wayne, namely the transition to adult services. He knows practical advice will be far more helpful than blindly approaching services and filling in forms.
For the blended family of Jen, Wayne and his two other children from a previous relationship, Molly (18) and Oisín (15), Christian’s teenage years are now not as challenging as his childhood because of their work with him and the intervention of a “brilliant” psychiatrist.
Wayne likens Christian’s autism to “a place that takes him away from us and he hides in it. We didn’t want him to hide in there because the times he would come out, he was extremely violent, agitated and wound up.
“He was like a demon, like he was possessed. At 6am he would wake up and he would be over you trying to scratch your eyes out, pulling your hair or biting you.”
When their son was aged about 10 or 11, Wayne says he and Jen were very lucky to meet a CAMHS psychiatrist who asked questions nobody else had ever asked. He prescribed medication “that allowed the fog to lift from Christian and then he started to do a huge amount of work [with him]”.
How does adolescence express itself in Christian? “When you see him next to his brother, a lot of things they do the same. Christian loves music and stares a lot at his phone and watches music videos,” replies Wayne.
“We know we are not going to find him out in the bush drinking with his friends, he doesn’t smoke but we do as much as we can with him. He is very social – we take him to gigs, we walk, we take him to the farmers’ market where everyone will talk to him as if he’s neuro-typical.
“He has reached an age where he has raging hormones so we set up – well, he set up – a safe space where he can do what he needs to do. We call it cartoon time.”
All in all, “his etiquette is pretty good, he knows what he can or can’t do; I guess he has those internal rules and I guess that’s what guides him.
“Is he a normal teenager? In some ways he is and in many ways he isn’t. We don’t lament any of that. He is a million times the person we were told he wouldn’t be.”
From the outset, the couple kept being told that Christian was severely autistic and were warned about all the things he wouldn’t be able to do. The fact that his son is now “really happy, it’s amazing, from what he was when he was younger”, Wayne puts down to he and Jen being a team. “We tag in and out and listen to each other.”
Services that provide interventions “instead of being top down, which squishes you, could be bottom up, which always works best”, he says. “Ask the parents what they want and then be active participants [with them].”
Raising a child with an intellectual disability or autism is a tough job that continues until the day you die, he points out. “If we were to die tomorrow, what would happen to Christian? Even now, pre-empting that, we are going to put a big scrapbook together with pictures and stories; there will be a chronicle of what he likes; how to hit the ground running with him, I guess.”
Molly and Oisín, who stay in the house half the week, are brilliant with him, says Wayne. As adults they will never be embarrassed, he remarks, because when they were younger, they were going to places where Christian would “nearly tear the paint off the wall”.
“They are in touch with their emotions and can talk really well for themselves. I think the benefits outweigh the deficits” in growing up with a special needs sibling.
For all the challenges of having a child with an intellectual disability, there’s also “loads of joy and that’s what keeps people going”, adds Wayne.
“With a child who is non-verbal, you can look in their eyes and in a split second it is the most amazing contact you will ever get. Even better than being drunk and meeting that woman in a bar! It’s mind-blowing.”
When Niamh Kerrigan’s younger child, Troy (15), turned to her in the car about a month ago and said how sad he felt that he didn’t have a sibling who he could talk to and play with, she knew she really needed to hear what he was expressing about his sense of loss.
Such a scenario had come up in the Parents Plus special needs programme, “which is something I had never been more grateful for”, says Niamh, who had attended because of Troy’s sister, her eldest child Lauren (16). If it hadn’t arisen, “I might have dealt with it differently, might have almost dismissed it without realising the significance of what he was saying to me at that time”.
Lauren, “a fabulous young woman”, has a few issues, she explains. “She has autism and a speech and language disorder, she has a cognitive disability as regards to language, sensory processing disorder, dyspraxia and a mild general learning disorder.”
Niamh attended the programme, along with 12 other parents/guardians, because she and her husband Tom wanted to be able to plan for their daughter’s future, when she has to leave her special school at age 18. But Niamh came away from the course, which was facilitated by Ciara Ní Raghallaigh over seven weeks at Scoil Chiaráin in Glasnevin in Dublin, with much more than helpful information about that transition from parents who had been through that stage.
“I learned other things along the way that I didn’t really expect,” she says. “Apart from the facilitators talking, all the parents were talking. And because we got to know each other and everybody was open, stories started coming out and it made things very real.” Tears and laughter flowed.
It wasn’t all about Lauren and her disabilities either. Not only were issues for siblings considered but also the impact on the couple relationship: “Were Tom and I addressing things the same way and were we backing up each other? And, more importantly, were we really listening to the kids, both Lauren and Troy, and what they needed.”
“I don’t think you are as open in a friends’ group to discuss certain things and I think this forum makes this possible and you don’t feel people will be looking at you – there is no judgment.”
Niamh realised she was doing too much for Lauren and resolved to do more to foster her daughter’s independence at their home in Swords. “She makes her own lunch now and I have left her in the house by herself, which was very hard for me, albeit I was only five minutes down the road at the shops. But it’s a start.”
She calls everybody in school her best friend
While Lauren is a “typical teenager with her messy bedroom”, and loves fashion and bling, Niamh feels the absence of friends in her life is a huge gap. “She gets on so well with adults; she is very open and very friendly. Even though she has a speech and language disorder, she never stops talking once she knows you. But she wouldn’t have friends; she would find it hard to keep a proper conversation going. Her peers I think would just wander off, they would get bored of just what interests Lauren. She calls everybody in school her best friend, whether they are six or 18, but they are not, obviously.”
Lauren was in a mainstream school up to second class because up to then she had only been diagnosed with a speech and language disorder and eventually dyspraxia. It was on her fifth assessment for autism, at the age of eight, that a diagnosis was finally made.
“She is very social, she will look at you and smile and she is very interactive – that kept throwing them,” says Niamh.
When Lauren is on horseback or mucking around the stables at Corballis Farm in Donabate, Co Dublin, she is on a level with her peers.
“The horses don’t judge and she adores them,” says Niamh, who is also full of praise for how accepting all who work and attend the therapeutic riding centre are. Lauren goes to camps there and while she may be the only one with a disability in that particular camp, or there might be a few others, her mother knows all the children will be very understanding and inclusive.
“I think wouldn’t that be wonderful if, in ‘normal’ schools, children would be more accepting like that.”