When Elizabeth Conway saw children eating yogurt out of pots at a playgroup, she wondered why her daughter Aisling couldn't manage that yet, even though she was older than them.
She reckoned it was just a matter of giving her time, thinking that “different children go at different rates”.
An only child, Aisling was a long-awaited baby for Elizabeth and her husband Fintan in Edenderry, Co Offaly, after nearly 15 years of marriage and a series of miscarriages.
Elizabeth also found herself having to translate what Aisling was trying to say to extended family and friends who couldn’t understand her. “I was a bit annoyed with everyone else,” she admits, “because what Aisling said made perfect sense”.
It came as a huge shock when, at a routine check-up for Aisling at 3½, a public health nurse said she was delayed in reaching her milestones and that her ability to speak and to communicate was very compromised. She was referred to the Health Service Executive Early Intervention team.
Over subsequent weeks, Aisling saw various therapists for assessment. “Everyone of them said there are red flags here – we suspect autism, we suspect emotional, social, physical delay. There wasn’t just that one word ‘autism,’ it was multi-disciplinary, that was the problem,” says Elizabeth. “Then truly, truly the nightmare began.”
Not able to speak properly, Aisling was getting increasingly frustrated at her inability to communicate, which was leading to behavioural issues. They had also found out she had hypertonia (muscle tightness), which made her prone to falls.
Many years before, Elizabeth had seen her foster brother Declan struggle with mental and physical disabilities, before his death in 1998 at 18. She had persuaded her parents to take him into their family as a baby, from The Cottage Home, in Dún Laoghaire, Co Dublin, where she had worked as a teenager in 1982.
“There is nothing worse than the fear that when you die, your child will have to be institutionalised,” she says.
While Aisling did get speech and language therapy and occupational therapy with what Elizabeth describes as the “brilliant” HSE Offaly Intervention team, they could only offer six- or eight-week blocks. “They did everything they could but we just needed longevity and intensity [of therapy] and they couldn’t provide those two. Then I was at a brick wall.”
She turned to the autism support organisation Saplings, in Mullingar, Co Westmeath, which provided invaluable aid and advice. "They said if you wait it will be too late for her" and that the more help they could get Aisling at an early age, the better the outcome. "Do not fall down a dark hole," one therapist urged her.
“They gave me a road-map for Aisling – the multi-disciplinaries that needed to be contacted to do X, Y and Z,” says Elizabeth who, with her husband – both computer software engineers – looked at remortgaging their house but so far have managed through juggling credit union loans and credit cards. “Sensational Kids was the last piece of the puzzle.”
We get the children who fall through the gaps
There's nothing clinical about the Sensational Kids centre in Kildare, which aims to offer therapy services that are accessible and affordable – no child should wait longer than three weeks to be seen here and the costs are subsidised. It's "open to all children, of all ages and all abilities", says founder and chief executive Karen Leigh.
Play centre
Situated in a business park on the edge of Kildare town, inside it looks like a big play centre, with brightly coloured ball pools, climbing walls, slides and swings hanging from the ceiling. It's fitted out this way, "so the children run in the doors and don't want to leave", she explains.
“Sometimes children going into therapy appointments have to practise things they are not good at, so the environment is very important.”
Once they are engaged mentally and enjoying what they are doing, the therapist can work with them on skills through play, without the children even realising. Leigh has no doubt that investing in equipping the facility leads to better outcomes.
“Children have to love coming into therapy,” she stresses. “There’s nothing worse than being a parent and trying to drag your child into something that they really don’t want to go to and really don’t enjoy because that is never going to work – no matter how good the therapist is.”
An estimated one in four children has some form of additional needs. With public services over-stretched and private services very costly for parents, Leigh sees the centre as bridging that gap.
Sensational Kids’ clients range from babies to university students but most of the 700 now attending each year are pre-school or early primary-school age. They can have any diagnosis or none.
"What typically happens is that children with severe to profound disabilities get picked up by other services who do a very good job with them, such as Enable Ireland and CRC [Central Remedial Clinic]," says Leigh.
“We get the children who fall through the gaps. We see a lot of children with autism, dyslexia, Down syndrome, ADHD and a lot of children who don’t have a diagnosis, have never qualified to have a diagnosis but need help at the same time. They may be struggling with handwriting at school, with attention and concentration, or speech delays.”
A registered charity founded on a social enterprise model, Sensational Kids operates on an annual budget of €750,000. It raises funds through business activities, donations, corporate sponsors and grants to run the services at a reduced cost to parents.
Leigh opened its Kildare premises 10 years ago this month with just herself and one occupational therapist. Now there are 21 staff and it is set to start services in Co Cork and Co Mayo before the end of the year.
Funding
A €45,000 grant from the Dormant Accounts Fund will enable the fit-out of new premises in Clonakilty, Co Cork which are due to open this summer. It also got an anonymous donation of €60,000 through the Community Foundation of Ireland to fund equipment for a centre anywhere in Connacht. Mayo was identified as being particularly badly served in terms of public services, so it plans to open in Claremorris by the autumn.
Since the inception of Sensational Kids, 4,700 children have benefitted from its services and it also trains 500 professionals a year – including teachers and therapists working in both the HSE and the private sector – through workshops. Some 10 per cent of attendees travel from abroad, such is the pulling-power of the international speakers brought in.
Profits from these events help fund services, as does the Sensational Kids educational toys business which is run both from a shop in its Kildare centre and online.
Leigh's own son Conor was the "catalyst" for the whole venture. After he had surgery at the age of four in Los Angeles, where the family spent the summer of 2005, he was referred to a centre called Can Do Kids for twice-weekly sessions of occupational therapy (OT).
As it was a six-month programme they were advised to go to their local OT centre on return to Ireland. But Leigh found there was no public service available in Kildare and she had to take him to a private therapist in Dublin.
Other services include education psychological assessments, play therapy, literacy programme, orthscopics
However, as they couldn’t keep making a three-hour round trip and paying the €120 a session she was being charged, Leigh resolved to try to set up a centre like the inspirational one Conor had attended in LA.
Now about to turn 17 and doing well in fifth year at school, with his sights firmly set on college, Conor is “is a shining example of how early intervention can help children with disabilities”, she says.
Occupational and speech and language are the two therapies most in demand at Sensational Kids. Other services include education psychological assessments, play therapy, literacy programme, orthscopics (use of tinted lenses for visual stress), the Wipe Out Worries programme for anxiety and two-day workshops on moving to secondary school for children with additional needs.
The base cost of a therapy session is €120, but Sensational Kids charges parents €75. “We will never turn a child away for financial reasons – our whole ethos is to provide affordable services,” says Leigh. They work with families to see what is affordable for them.
No ticking clock
Also, there is also no ticking clock; therapists and parents work together to agree targets for a child. “It’s not about discharging children after a certain amount of time, it’s about working with them until their goals are achieved,” says Leigh. More than 90 per cent achieve their goals before being discharged and of those who don’t, it’s usually for good reason, such a service elsewhere becoming available.
“Each child is different and you can never say to a parent their child is going to need X number of weeks or X amount of sessions of therapy,” she points out. Apart from the individual child, there are other factors such as how much work can also be done at home and in school.
When Aisling started going to Sensational Kids last October, the plan was that she was going to do speech and language therapy for at least a year.
“They kicked us out in December and told us we were wasting our money” because Aisling is full of chat now. “I think now we did waste our money, because we can’t get her to keep quiet,” says Elizabeth gleefully. “Here was a child who didn’t look at me when she talked.”
They are continuing with occupational therapy and the week we speak there was a big breakthrough when Aisling climbed and went down a slide in the Rhode playground. This had been simulated in occupational therapy "but she did this on her own, without mammy, without the therapist", says Elizabeth, who describes the improvement in her daughter as "phenomenal".
“Now she is becoming the daredevil and scaring me. She is jumping and finding awareness of her body” doing obstacle courses and climbing trees. “And this is a child who was afraid of her own shadow.
“She is just thriving and finding her own abilities. She is grabbing everything with such joy – I have never been so tired!”
It is not just Aisling’s gross motor skills that are being worked on at Sensational Kids, but also fine motor skills in preparation for handwriting at school. Now 5½, Aisling will start mainstream school in September, at St Mary’s primary school in Edenderry.
While once Elizabeth would have been apprehensive about seeing her daughter make that move, now she says: “I can’t wait – bring it on”.
The Enchanted Fairy and Elf Festival in Rathwood, Tullow, Co Carlow, May 19th-20th is to raise funds for Sensational Kids. Tickets (€10 for children and €7.50 for adults) must be pre-booked online at sensationalkids.ie.
SPEECH AND LANGUAGE THERAPY
Almost 10,970 children, aged 0-18, were waiting for an initial speech and language therapy assessment at the end of March 2018, according to latest figures obtained from the Health Service Executive. That’s a six per cent increase in waiting-list numbers since February 2017.
Another 7,071, who had been assessed, were waiting for their therapy to begin – down three per cent in that same period. And 11,444 more were awaiting further therapy – a 13 per cent increase since February of last year.
However, overall, waiting lists for speech and language therapy have been reduced by 10 per cent since July 2016, when the HSE allocated an extra €4 million to the service.
Data compiled up to the end of February 2018, indicates that 75 per cent can now expect an initial assessment to be completed within four months of referral. Yet, waiting times depend on where you live. For instance, the 69 children who were waiting more than two years for assessment live either in the Kerry/Cork region or the south Dublin/Kildare/West Wicklow region.
The HSE’s 2016 Service Plan allocated funding for an additional 83 speech and language therapist posts, of which 78.8 are now in place. This has enabled the provision of an additional 77,391 appointments to date, according to a HSE spokeswoman.
Since July 2016, there has been a 20 per cent reduction in waiting lists for assessments, a 17 per cent drop in numbers waiting for therapy to begin but an eight per cent increase in those waiting for further therapy.
In February this year, there were 20 children who had waited more than two years for their therapy to begin and they are all in the CHO4 area (Kerry/Cork).
Ahead of opening a new centre in Clonakilty, Co Cork, this summer, Sensational Kids has started to provide speech and language therapy services in the town. Led by Elaine Baldwin, who has worked in the Kildare HQ for the past four years, there is also a weekly walk-in clinic at the GAA Club in Aghamillia, on Wednesdays, 6pm-8pm.
Public therapy services, once they are accessed, are incredibly good, says Baldwin but the problem is the wait. At the same time, there is much talk about the importance of early intervention.
The drop-in clinic is an opportunity for parents to come in with a concern they may have about their child’s speech and language development. Sometimes that concern has to be acted on, she says, other times it might just be giving reassurance that it is okay to wait and see a while longer.
Appointments for speech and language therapy at Sensational Kids in Clonakilty can be made by telephone at 045 520900.
SENSATIONAL KIDS BY NUMBERS
– 10 years in existence
– 21 staff
– 700 children now attend its Kildare centre every year
– 2 more centres to open later this year, in Clonakilty, Co Cork and Claremorris, Co Mayo
– €750,000 annual budget
– 500 professionals attend its training workshops each year
– 10 per cent of workshop attendees travel from overseas
