Speech and language delay: ‘I was told he would have to go on a second waiting list before therapy would even begin’

When a public health nurse referred Marie Boyne’s first child to be assessed for a serious speech and language delay at age 2½, there was a waiting list of 18 months just for the assessment.

“I was told he would have to go on a second waiting list before therapy would even begin. The initial thought was that he was going to need an extensive amount of therapy to try to catch up with his peers and, more than likely, he wouldn’t be able to start school at the age of four, or even five, because his speech and language was delayed.

“When you hear news like that, I do find it is either a sink or swim moment,” she says. “You can either just wallow in self-pity and think why me?, why my child? or you can be proactive and go look for extra support around you. So that’s what I did.”

Living with her mother in Pearse Street, Dublin 2, at the time, she asked around, among professionals and local parents, was there anything she could get her son into in the area that would promote his language. The one thing that kept coming up was the Early Learning Initiative (ELI), based at National College of Ireland (NCI), just across the Liffey in Dublin 1. After making contact, somebody was out to the house within a week to assess the situation and see if she and her son, Zach, fitted the criteria for their home-visiting scheme. Just two weeks later, a visitor arrived at the door to start delivering the two-year programme.

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“There was no waiting list, which was amazing. They listened to my concerns and I felt that I was heard.” Every week the visitor brought Zach a new toy or book and Marie was taught strategies to encourage him to communicate, whether verbally or non-verbally. “The bonus of it all was that it was free – I thought I was going to have to pay.”

Zach responded well to the home visitor, who advised Marie to name out loud everything her son was pointing to or playing with. “I noticed a huge change in him within a matter of weeks. His concentration level of playing had grown massively; he wanted me to be sitting down interacting with him all the time,” says Marie, who was working in childcare, having done a PLC course, and her mother minded Zach. “I gained more confidence with Zach as well and I think that paid off for him. We both thoroughly enjoyed the programme.”

She was hesitant about bringing him to the occasional group events that ELI ran for participants because she didn’t want other people in the community to know about her involvement and that her son was struggling. However, soon enough “I realised it was something to be proud of – my child was coming on leaps and bounds. If I had sat at home waiting for his appointment, God knows it could have been a very different story I would be telling.”

Zach’s assessment for his speech delay came at the end of their first year with ELI and Marie was still told he was going to need a lot of therapy, for which he was put on another waiting list. Yet, when he graduated from ELI one year later, after a total of 94 home visits, he had an extensive range of vocabulary and was putting sentences together, says Marie.

When Zach finally had his first session of speech and language therapy in the HSE’s primary care centre, the therapist “was convinced I was bringing in a different child. She couldn’t believe the difference – and even though I seen it myself and people around me were saying it, to have a professional say it to me was a lovely thing.” He was discharged from the service after that one session, with the therapist assuring Marie that he was ready to start school with his peers.

Mission accomplished then for Zach, who is now aged 11. But the ripple effect was only starting for Marie (36), who is sitting telling her story in an empty meeting room in NCI’s attractive, glass-fronted main campus on Lower Mayor Street. It’s here ELI was launched in 2006 to address educational underachievement in the disadvantaged communities of Dublin’s Docklands and east inner city, where shiny new, corporate blocks dwarf the granite and redbrick remnants from previous generations of builders, in a rapidly changing streetscape. The daily influx of lanyard-wearing professionals is yet to reach pre-Covid proportions and, on this sunny weekday morning, pedestrians are thinly scattered on the streets around NCI.

ELI’s main focus is on children aged zero to five years because that is where they can make the greatest impact, explains its assistant director, Catriona Flood. She is also manager for the Area Based Childhood (ABC) programme in this site – one of a dozen around the country – which involves a consortium of local organisations, with NCI as the lead agency here. ABC has funded a good deal of ELI’s work since 2014.

The flagship programme delivered by ELI’s home-visiting team is ParentChild+, an evidence-based intervention that was developed in the US, for children with a speech delay or some other concern. Referrals mainly come through public health nurses, or parents can apply themselves as Marie did, for what is a high-intensity programme lasting two years. Currently there are 170 children, with their families, enrolled on it.

“It’s a voluntary programme; you don’t have to go to it, even if you are referred by your public health nurse,” says Flood. “Everyone must want to do the programme.”

The focus is school readiness, supporting language development through play and books, she explains. “It also really fosters that bond between parent and child. It helps dissipate behaviour issues.”

We try to focus on the positives within a community or within a family and try to build on those protective factors

—  ELI's assistant director, Catriona Flood

The 35-strong team of home visitors, whose distinctive pink T-shirts single them out in the neighbourhood, also deliver a 0-2 programme based on the former community mothers’ scheme. This focuses on health and wellbeing, promoting mother and baby bonding, and includes elements of child development.

“It is offered to any new mum in the area but, if the parent needs more support, they get more support – more visits and it lasts longer,” Flood says. About 130 families are receiving it now.

ELI’s other programmes include early numeracy ones in about 36 different services, both preschools and primary schools, where it has a broader influence on staff and parents, as well as children. Youngsters can also avail of supports at secondary level and within youth groups. All in all, ELI estimates its work reaches up to 15,000 people.

The traditional docklands community has seen huge demographic changes in its midst over recent decades. While some of the incoming corporate firms’ international workforce have found homes in newly built apartment blocks, there are also asylum seekers, refugees and now Ukrainians, along with other homeless housed in transitional accommodation. The home-visiting team includes Croatian, Spanish, Mandarin, Polish, Latvian and Romanian speakers to meet the diverse needs. While they try to match children with a visitor fluent in their mother tongue for the first year of the 0-2 programme, they generally switch to a native English speaker for the second year, in preparation for preschool. Language can be an extra obstacle for the newest residents of an area where there are long-standing social and economic barriers to progression in education. What do those working with ELI see as the main challenges for parents raising children in such a disadvantaged area?

“We try to focus on the positives within a community or within a family and try to build on those protective factors,” replies Flood. This, they believe, will “help mitigate against the other risk factors that might be in the area”.

They primarily focus on education because research shows that, generally, children from disadvantaged backgrounds are more likely to start school less ready than their peers in better-off areas. Then they are “more likely to fall behind in school and that will have a big impact on their life later on, potentially”, she says, “and it is harder to pull that back once it starts happening. Education can be so transformative in somebody’s life and really make a difference between what path you take.”

Trying to ensure that children are starting school ready to learn, and then supporting the parents, to help their children thrive at school, is “about giving families the opportunity to succeed, no matter where they come from”, adds Flood. “It is quite aspirational but it does work – we’ve seen it work in individual and multiplying cases.” It has certainly “worked” – and then some – for Marie and her family. She was pregnant with her second child by the time the home visitor had finished with Zach and was inspired to rethink her life.

Kate was non-verbal at the start and now she never stops talking, it’s brilliant

—  Kate's mother, Tracey McGaughren

“That one-on-one attention was so wonderful and it made such a difference, not only to the child but the whole family as well, I knew that was the career I wanted to take,” she says. “I didn’t want to go back into a creche setting.”

Buoyed with confidence built up by the home visitor – “she could really see something in me” – Marie successfully applied to become a home visitor herself. Since then she has completed an honours degree in Early Childhood Education and Care at NCI and was promoted last September to her current role of parent support groups co-ordinator. She believes having been on the receiving end of the home-visiting programme gave her an edge in delivering it. “I felt the parents opened up to me a lot quicker.”

To have somebody come into your home is a big deal, she says, “so I knew exactly how these parents must be feeling. I’d go in and [say], ‘look, I was a parent on the programme, I was where you are’. As soon as I said those lines, the shoulders relaxed, the breath came out.”

Living on the southside, she was mainly assigned families on the northside. “You’re spending almost two years with this family, so it’s better to go into somebody that you don’t know,” she says.

Meanwhile, recognising that her second child, Evie, who is now aged eight, needed social activities, Marie started bringing her to ELI’s child and parent groups. They meet in venues such as local libraries and health centres, to do a range of activities, including music and dance; storytelling; mother and baby fitness; and baby massage.

“It has huge benefits, not only to the parent but to the child as well,” says Marie, who then added facilitating groups to her work as a home visitor.

While she felt she had the experience and knowledge to support families, she wanted further education to give her a “professional demeanour”. When ELI and NCI collaborated to provide an early childhood education and care degree course, “I grabbed the opportunity with both hands”, attending college in the evenings twice a week.

“Year one I was like flappin’ geese running through the college. It didn’t come easy to me but I stuck with it,” she says, acknowledging the support of fellow students and ELI colleagues. “The second year I thoroughly enjoyed and I definitely found my feet.” Soon after starting third year she found out she was pregnant with her third child, Seth, now aged four. However, apart from tiredness, it was fine. Then she had to decide if she was going to go into fourth year with a newborn and complete the honours degree.

“I knew if I left college, it would have been very hard to go back juggling three kids and a job. So I said ‘I’ll go with the newborn, take it semester by semester. I’m going to be up doing night feeds anyway, I might as well be writing my thesis’,” she laughs. She is very proud that she graduated with an honours degree, “and my children survived”.

The first of her family to have a degree, Marie, who has three siblings, now lives in Ringsend but “loved” growing up in Pearse Street. “My mam came from a family of 15 children [raised in a two-bedroom flat] so there were a lot of cousins around.”

Asked for her view about particular challenges for parents raising children in the locality today, there’s a protracted silence before she chooses her words carefully.

“There is not a huge understanding of how important ECE [early childhood education] is,” she ventures, with parents not realising that preparation of a child for school starts at a much earlier age than would have been the norm. There are also “challenges families face day to day, regardless of where they’re living”, she adds. “Our main aim is to increase the awareness of how important early play is and preparing the child for school from an earlier age.”

As we finish the interview, the latest 24 children and their families to complete ParentChild+ are gathering downstairs in the college for a graduation ceremony. Among them is four-year-old Kate Arnold from Crumlin, accompanied by her parents, Paul Arnold and Tracey McGaughren, and her grandfather, Tony McGaughren.

Tracey is full of praise for their home visitor, Deirdre Bates, and the two-year programme. Kate was non-verbal at the start “and now she never stops talking, it’s brilliant”, she says.

Yet another satisfied beneficiary, as ELI continues to make a difference – one family at a time.