In regular school, it’s waiting list after waiting list

In regular school, it’s waiting list after waiting list
Geraldine Fennelly with Seán and MJ, who both have Down syndrome.

With HB’s Ice Cream Fundays campaign in support of Down Syndrome Ireland continuing until the end of the month, Health Correspondent Catherine Shanahan talks to one woman who will be ‘eternally grateful’ to the organisation for its help.

Life for a mother of three boys is fairly full on, but nowhere near as intense as Geraldine Fennelly’s experience.

It took an inordinate amount of resilience to recover from the devastation of giving birth to a second child with Down syndrome, less than three years after the first.

It was probably only after the birth of her third child, Finian, who does not have Down Syndrome, that Geraldine could finally see some light.

“It was devastating with MJ and Seán. When Sean, our second son, was born, that was a very tough time. It was very tough until the other little man, Finian, came along, and that lifted us up a great deal.”

Geraldine’s had a challenging few years securing services for her sons with Down syndrome, particularly in the case of Seán, who attends mainstream school.

Up to the age of six, our children get a lot of support through the early-intervention services. That was my experience,” she says.

“They got a lot of regular intervention in the form of occupational therapy and speech and language therapy.

“But once they reach six, the intervention ends. Once they go into mainstream school, it’s waiting list after waiting list.”

Seán has been on a waiting list for occupational therapy since he started school five years ago. He’s had very few supports. Geraldine, from Waterford City, says there is no HSE psychologist in their part of the city to deal with behavioural issues, which Seán has. Neither has a social worker been assigned. MJ has a social worker, but she is attached to the special needs school that he attends. Both boys have huge needs and have moderate disabilities, says Geraldine.

She toyed with the idea of sending Seán to the special needs school but was dissuaded by a psychologist, who felt he might prosper more in mainstream education.

The decision meant while MJ had access to specialist services in school, Seán did not.

Things started to get tricky for Seán in mainstream school as he grew older and the gap between his peers widened. He went through a very unsettling period at the start of the last school year when the person who provided his special needs assistance was out sick. His behaviour deteriorated. Geraldine was at her wits’ end.

I was in a situation where he could have lost his place in the school,” she says. “I was lying awake in bed at night, worried sick. We didn’t know how to help Seán.

Geraldine, a social care worker for 20 years who gave up her career to look after her children, rang Down Syndrome Ireland in desperation and asked for advice.

It arrived in the form of Fidelma Brady, the organisation’s education officer, and Aoife Gaffney, national employment and projects officer, who is also qualified to do behavioural therapy work with children.

Fidelma’s background is primary school teaching but she’s passionate about special education. She visits schools where she generally meets with the class teacher or special needs teacher to discuss how the child with Down syndrome is progressing. She advises on what practical supports can be put in place to improve their school experience.

Fidelma and Aoife and a Down Syndrome Ireland speech and language therapist sat down with the school and discussed what Seán needed. It had a positive effect all round, she says.

It’s after making such an improvement to the quality of his school day,” says Geraldine, “and the staff are more confident in their handling of Seán and more empowered to work with him. The reality of it is, if I didn’t have Down Syndrome Ireland to turn to for advice, I wouldn’t have anyone.

Geraldine has already enlisted Aoife to help get Seán settled in at the start of the next school term.

“I can’t go back in September after eight weeks’ holidays and expect him to get straight back into a routine. He does need support, and the teachers do as well, in order for him to do his best.”

Geraldine is eternally grateful to Down Syndrome Ireland for its support and advice and is taking part in its HB Funday campaign, focused on raising funds which will go towards educational supports for children with Down syndrome.

“I’ve been running it myself for the last two years in Seán’s school,” says Geraldine. “Prior to that, I used to help another mother with a Down syndrome son, now she comes back and helps me. We need a few hands on deck, heads down, chopping ice cream.”

- HB Hazelbrook Farm Ice Cream Fundays campaign in support of Down Syndrome Ireland continues until the end of June. To get involved and host your own party, freephone 1890 37 37 37 or register at downsyndrome.ie

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