Three-year old Conn Brennan is wary about the idea of clambering over the platform swing to reach toys on the other side. Feeling it sway underneath him is not a sensation he likes.
As he retreats to the safety of occupational therapist Dana Katz-Murphy’s lap, she hugs him hard and produces another toy to play with. But before long she is encouraging him to have another go at getting over that swing.
This sequence is repeated several times before Conn, who has Down syndrome, reaches the other side under his own steam, much to his own delight. It's all one big play session for him here in a sensory-integration gym at Sensational Kids, a child development centre outside Kildare town.
But there’s science behind every move, as Katz-Murphy explains. With this swing, she’s working on his vestibular system, which includes parts of the inner ear and brain that process the sensory information involved in controlling balance. Repetition of tailor-made activities for Conn helps to reinforce neural pathways and hugs calm his nervous system.
“If I hadn’t given him the regulating input and I had kept pushing him, it would have overloaded his nervous system,” she says afterwards. “It would have felt scary and dysregulated him and then he might have had a meltdown because it didn’t feel nice for him.”
One in four children in Ireland has a special educational need. That could be due to Down syndrome like Conn, or autism, dyslexia, dyspraxia, ADHD, sensory-processing disorders or some developmental delay. The earlier such issues are noticed, the sooner difficulties can be addressed to help the child to reach their full potential.
The Covid-19 lockdowns were a double whammy for many of these children – not only was daily life turned upside down but they lost out on extra support they might have been getting, through school and therapy sessions. Sensational Kids, a social enterprise which provides subsidised therapy sessions at centres in each province, is now picking up the pandemic pieces.
As a non-profit organisation, all its income goes towards reducing the cost of each therapy session by €45 for the children’s parents. It has four strands of income: fundraising, an online shop selling developmental toys, training programmes run for teachers and other professionals and the reduced fees parents pay.
Pandemic impact
The nature of the impact of the pandemic on children has depended very much on family situations and individual diagnoses, says Katz-Murphy, an internationally recognised therapist who Sensational Kids was delighted to recruit as its clinical services manager from her native South Africa at the end of last year.
“There are so many contributing factors, it is difficult to say ‘the pandemic happened and this is what we are seeing in children’.”
But, she continues, when you consider that for “occupational performance”, a child needs be able to play, to go to school, a good night’s sleep, limited screen time and exercise and physical activity, all of that was disrupted during lockdown.
“It was disrupted for us as adults but we have the cognitive ability to override it and understand what is happening. For children, everything just suddenly changed.” While we could explain it to them, “it is quite hard to comprehend something you can’t see”.
Parents’ anxiety levels were high and human moods are contagious, she points out, particularly for children with sensory sensitivities who are very tuned into emotions. “All the things children need to keep them happy, to keep them engaged, to keep them what we call ‘regulated’ kind of went out the window. Even for your typically developing child, that was challenging.”
For the neuro-diverse and those with high anxiety, it was particularly hard.
However, some children with sensory processing disorders really enjoyed being able to stay at home. They didn’t have to engage with people in busy, loud and brightly lit social environments. “For some children and introverts, it actually worked for them but for the majority of our children it really impacted on the balance of their occupational performance and, for some children, on skill development,” says Katz-Murphy.
Preschools and primary schools have seen regression in some children, particularly in social skills. There are increased levels of anxiety, particularly in tweens and teens who lost out hugely on social interaction. "You have a 10 year old presenting like a younger child because of regression in social skills, play skills, sharing – all those valuable skills you really only learn through play with other children," says Maria Osborne, an educational psychologist at Sensational Kids. While parents can teach these in theory, the best way of learning is from peers with good social skills.
There is no one “recipe” for getting children back on track after the last two years, says Katz-Murphy. It depends on the child and each family has its own story but, if there are no developmental delays or issues, the typical kids should catch up quickly. “Those who need extra input will take a little bit longer.”
And that, of course, will depend on what opportunities there are for them to get that “input”, through therapies and other supports.
Already notoriously long waiting lists for public paediatric services, such as speech and language therapy and occupational therapy, have been lengthened by the pandemic. Here at Sensational Kids in Kildare, which once prided itself on no waiting times, there’s now a substantial backlog. About 200 children are on waiting lists for several therapies, although there is still no wait time at a couple of the organisation’s other centres.
National centre
One long-term answer to meeting demand is its plan for a €11 million, national child development centre, to be custom-built on a 2.4 acre site off the M6, beside the Kildare Village shopping complex. With planning permission secured, and €9.4 million already raised, work on the site is expected to start in May.
"It will really scale up our capacity to support children," says chief executive Karen Leigh. Currently, about 1,000 children a year attend Sensational Kids' four centres – here, and in Clonakilty, Co Cork, in Claremorris, Co Mayo and in Clones, Co Monaghan. When the new, 1,579sq m Kildare centre is complete, it alone will be able to cater for 3,000 children a year.
“It really is a dream come true,” says Leigh, who set up Sensational Kids from her kitchen table 15 years ago. The new centre, comprising four multi-sensory gyms, 11 individual therapy consultation rooms, training centre and an outdoor space, will be “everything I as a parent ever dreamed that children should have and deserve to have”, she says.
It is an inspiring story of a mother experiencing a gap in services with her own child and then being determined to do something about it for other families. A former customer services manager, Leigh knew nothing about occupational therapy (OT), until her eldest child, Conor, underwent specialist surgery at the age of six in Los Angeles in 2005.
A psychologist, who noticed that Conor’s fine motor skills were poor, recommended twice-weekly sessions of OT for six months. All very well in LA, where the family stayed that summer, as he was referred to the Can Do Kids therapy centre in the city. But when they returned home to Kildare, there was nothing for him. Leigh’s only option was to take him to a private practice in Dublin, but the expense and time-sapping commute soon limited that. Realising there was nothing in Ireland like the LA centre Conor had attended, she had the vision of creating one here.
Two years later, on the outskirts of Kildare town, an industrial warehouse with roller shutter doors, bare block walls and a concrete floor, was transformed into a colourful, multi-sensory gym. Despite acquiring other units in the industrial estate over the years, Sensational Kids has “completely outgrown” the available space. Leigh is now back working entirely from home, having given her office to a therapist.
Sensational Kids is also looking at immediate ways to respond to the post-pandemic surge in demand for assessments and therapies. One-on-one therapy is best practice, stresses Katz-Murphy, but they want to try alleviate the stress of parents whose children are on waiting lists and getting no support.
Plans include partnering with schools around the four centres, offering therapeutic support on school premises and helping teachers with strategies in the classroom. It is envisaged therapists could do “early intervention screening” to try to identify children at risk, says Katz-Murphy. Maybe there is an issue parents can start working on before it becomes a bigger problem.
Virtual clinics
The centres will also be offering virtual clinics, where parents can discuss their concerns about their child with a therapist. “I think parents need to be heard,” she comments. Sensational Kids is also developing home kits focusing on, for example, enhancement of fine motor skills or gross motor skills or speech and language, to help parents work with their children.
“None of this would be therapy per se but they will all use therapeutic principles and therapeutic tools and be developmentally based.”
The use of play-based group work for children who have skills delays will also be expanded, to reach more children quicker. Each child is assessed and categorised according to abilities and put into groups of no more than five others at a similar level. For the children it’s more fun to be with peers, she points out, and for parents the cost is further reduced.
Conn has only had a couple of therapy sessions with Katz-Murphy so far but his mother, Marie Brennan, says that already she has seen “dramatic improvements” in his movement, his co-ordination, his pincer grip and the use of his two hands. She too is more focused on what he needs, being able to watch how the therapist plays with him.
We were being pulled in too many directions and he didn't get the attention nor the services he needed
There was little time for one-on-one interaction during the lockdowns, when Conn’s twin brother and two older siblings were at home all day as well. “We were being pulled in too many directions and he didn’t get the attention nor the services he needed,” she says. Conn started walking only last September and she believes that would have happened sooner if he had got therapy at the right time. The OT is also helping with his feeding issues.
“For parents of additional needs, you have to fight for everything and with something like Down syndrome you have got medical stuff as well as the developmental stuff.”
You have to prioritise the child’s medical needs, she says, leaving little energy for hunting down other services.
A PR professional, Marie, who has a sister with an intellectual disability, served on the board of Sensational Kids for a time, before she started her family. She had no idea then that she would be back, not only needing the services at a personal level but also, professionally, joining the management team in 2020.
“It’s full circle,” she adds. “Everything for a reason.”
