Latest news with #DownSyndrome
BreakingNews.ie
a day ago
- General
- BreakingNews.ie
'There was a joy about her that is gone': Parents speak out about Down syndrome regression
Parents of those with Down syndrome are speaking out about their children beginning to regress when they reach adolescence or adulthood. Many families in Ireland are affected by Down syndrome regression, a condition marked by the sudden loss of previously acquired abilities that can progress rapidly over weeks or months. Advertisement The number of cases of Down syndrome regression is growing, yet in Ireland, there is no clear medical or support pathway for those affected. Symptoms include loss of speech, motor difficulties, social withdrawal, compulsive behaviours, and in some cases, individuals become non-verbal, unable to care for themselves, or engage in previously enjoyed activities. Sorcha Ward's daughter, Aoife, from Co Donegal, was around 18 when she began regressing in 2016. A once happy, fun-loving, GAA-obsessed young woman, she started becoming slow to get ready in the morning, putting her clothes on back to front, and having bouts of crying for no apparent reason. Advertisement I haven't given up for Aoife yet She used to have excellent timekeeping, often being up and ready for the day before her mother even woke up, but quite quickly, she lost interest in almost everything. 'If an elephant fell from the sky in front of us, she wouldn't take any notice of it,' her mother, Sorcha, says. That was around 2016, and now, eight years later, 'she's middling,' according to Sorcha. 'She's not like she was before she regressed, but she's better, with treatment, she's a bit better. She hasn't regained a lot of the stuff she lost; she's sort of happy enough, in some ways.' Advertisement Sorcha took her daughter to the GP in 2016 to discuss the issues, and it was 2021 before they got a diagnosis of catatonia in Down syndrome. A 'battle' for medication Aoife received medication to try and combat the regression after a six-month 'battle' for it, but that has since been stopped. According to experts in America, the longer you wait for a diagnosis, the less effective treatments are likely to be, Sorcha says. Regardless, Sorcha says, 'I haven't given up for Aoife yet'. Advertisement She had never heard of Down syndrome regression until it was mentioned to her, and Aoife's symptoms fit. 'I said, oh god yeah, she's slow getting up in the morning, she's putting her clothes on back to front, all these things, simple stuff, not knowing her numbers, stuff that she did know from school." Even when Aoife would write a card for somebody, she began getting her letters mixed up, and Sorcha says, 'I was kind of getting annoyed with her, like 'Aoife, you know that', but she just didn't know'. 'She just lost interest in everything, lost interest in football, didn't want to go to anything… She must have spent about a year in bed, she didn't want to come out of that'. Advertisement Sorcha knows that her daughter was always going to have challenges, 'and with the Down syndrome, there were things she wasn't going to be fit to do, but she enjoyed life'. There was a joy about her that's gone, it's not there now Aoife even had a job in a local café in 2016, 'and she thought she was mighty, heading into work,' her mum says. But come 2017, she was no longer able for it, 'she was getting overwhelmed, then these terrible episodes of crying, but she was really happy, and messing before this happened.' Aoife loved going on holiday and flying, and getting out of the house with her parents, even if just to do a food shop. She would answer the phone, she slept well, ate well, and 'she was as healthy as any of us in the house were, probably healthier, really'. 'It all changed' 'So that's the way she was, and then it all changed… she just got worse and worse'. She stopped sleeping and would be up all night 'rocking' in bed. 'You'd be afraid she'd split her head on the back wall, [staying up] every other night with her,' Sorcha says, and the regression affected everybody in the house. 'We weren't getting sleep then, that alone, and then just having to watch her going through, sitting on the seat and just not speaking to us, saying simple things to her and her not even knowing you were in the room'. 'That's the sense you got because she didn't look at you, she didn't look you in the eye, she wasn't aware what was going on around her'. 'When she was very bad, along with the movements, she was making noises… it was tight [awful], I definitely wouldn't want to see anybody else go through it,' Sorcha says. Awareness Sorcha wants awareness that Down syndrome regression is something that can happen, and she wants that awareness within the medical community and families of people with Down syndrome alike. 'We can't be letting these people just be like this, it's not right. If I lost what Aoife lost, if I lost my speech, if I didn't know what day it was, if I didn't know how to write something anymore, there would be somebody testing me for things, I wouldn't be just left'. 'It's not right, why does it seem to be alright to think it's up to something else, it's not that serious or whatever, it's a very serious thing,' Sorcha says. It's a whole life, it's a life-changing thing for everybody who is involved in looking after that person, it involves the whole house'. Sorcha doesn't apologise for getting emotional anymore, she says, because 'there's no harm in getting emotional about stuff, that means you care'. 'I'm her mother. I don't want the best for Aoife, I've given up on that a long time ago, because I do believe she was let down. Had this diagnosis come earlier, I believe she might have been a better Aoife now, but I did my best.' Ray Harte , of Portlaoise, Co Laois, first noticed a difference in his son, Aaron (28), around 10 years ago. 'It would've been just around the time he was leaving special school to move out into day services. That summer we noticed a whole change in his behaviours and lots of stuff like that,' Ray explains. 'The initial thing that we saw with them was like a zoning out, and we thought it might be something like some sort of epilepsy or something like that'. What we found was that the current, I suppose, medical approach to Down syndrome tends to be to lump it in under 'it's Down syndrome' 'There was a dramatic change; he would zone out, and he could be staring into space, and that was the start of it". Aaron Harte from Portlaoise. Since then, Ray and his wife have brought Aaron for 'all types of tests,' scans and anything that 'might show up something'. Tests for physical issues They checked common ailments first, he explains, testing physical issues such as eyes, ears and teeth. 'Really, what we found was that the current, I suppose, medical approach to Down syndrome tends to be to lump it in under 'it's Down syndrome,' and a lot of diagnoses tend to be around depression and stuff like that'. 'We have been through the mill with this young man and he's been through the mill with us, but it has brought huge stress on the family because you're dealing with something that you don't really know how to deal with, because like some of the behaviours, we went through phases of extreme aggression, where obviously, Aaron didn't know what was going on'. Aaron has flipped the kitchen table, thrown dinner plates, and gotten physically violent before, but Ray says that, although they have gone to multiple medical professionals and specialists, they have not been able to give him answers about what was going on with his child. After doing his own research in 2020, finding Dr Jonathan Santaro in California and his research on Down syndrome regression disorder, Ray brought it to medical professionals, but noticed that they were not aware of the disorder. Aaron has since been prescribed antipsychotic medication after the family worked with a specialist. It has helped in some areas, but 'again, nobody has said 'this is what the problem is''. 'Until you get that firm diagnosis, it's very, very difficult to deal with it. We can only deal with it in the traditional manners, which, a lot of it tends to be medication,' Ray says. Work with Down Syndrome Ireland Ray began working with Down Syndrome Ireland in 2024 to bring awareness to Down syndrome regression, after contacting them and asking for help. Aaron is now in a person-centred day service, and they have a support worker who works with Aaron on a one to one basis, and helps the parents deal with some of the behaviours and issues they were going through with their son. 'You chastise your child no matter what, whether they have Down syndrome or not, you'll chastise them if you think his behaviour if there was a problem'. However, Ray noticed there was nowhere for parents to be advised on how to deal with the behaviours that come with Down syndrome regression, 'you just didn't know what you were dealing with'. 'The element of nobody being able to actually put a finger on it, you find then at times it's a little bit hit and miss in trying to diagnose what's going on, because it could be depression, it could be anxiety, it could be psychosis, it could be, physical problems, but you can't get that,' he says. Support One thing he says helps him, though is having a support network, as he has been chairman of the local Down syndrome branch for years. 'When you did find you were under a lot of stress or pressure, that if you did have other parents you could talk to, it can always kind of lighten the load, and they always say that if you're able to talk to somebody, it makes it an awful lot easier.' However, Ray hopes that the research into Down syndrome regression in America will eventually point towards what triggers it. 'This is what makes it so difficult is that we don't know what causes it and then trying to get a diagnosis on it is very difficult, so you're kind of in no mans land, you can imagine the element of stress and worry because you don't know what's going on and again we have the added problem our man is technically nonverbal so he can't really tell you what the problem is,' he says. Short window for results 'The other concern I have on this as well is that in talking to Jonathan Santoro, from some of the work they've done in the States, there is a very short window in this from diagnosis to getting, if you want to call it, positive results. They say there's about 2.5 years that tends to be the gap where they get the best results'. 'Like my young lad now, and there's possibly other adults out there that maybe are going through this for longer periods, so we don't know, even if he does get treatment for this, we don't know where he's going to come back, where his baseline is going to be,' Ray says. 'But it's quite possible it won't be back where it was before we started out on this, and before we started out on this like he was a gregarious, friendly young lad, and goy involved in everything, everyone knew him, and now he's withdrawn, a lot of anxiety'. It creates its own element of isolation, an exclusion Ray describes his son's condition as 'as if you had a different person in the house'. Regardless, family life continues. Ray has two other sons, one older and one younger than Aaron, with his wife. 'We have to live our lives, and we have to live the lives with our other children, and sometimes it's very difficult when a lot of attention is on one individual in the house'. Ray is hopeful that they will be able to identify that Down syndrome regression disorder is what his son has developed. 'It kind of has to be done, as you say. It's your child, you have to look after them no matter what, no matter how things are.' So he continues the fight, the research, and the hope, to get an answer for his son and any other family affected by the condition.
Irish Independent
3 days ago
- Entertainment
- Irish Independent
Colin Farrell to narrate new RTÉ documentary series about the history of Ireland
The RTÉ series From The Small Island was shot on location in 17 countries, including Ireland, Barbados, Belgium, Singapore, Switzerland, the United States and the United Arab Emirates. It aims to tell the story of the Irish people, with the first episode going back to the ancient Céide Fields and the earliest settlers, including the discovery of the remains of a baby with the Down Syndrome gene who was cared for over 5,000 years ago. The series will also touch on the Viking invasions, the Christianisation of Ireland and the modern day. It will also include the television debut of the face of 'Rathlin Man', a 4,000-year-old ancestor whose face was reconstructed using cutting-edge DNA technology, the history of the first written reference to hurling and forgotten Irish explorers. The programme will also touch on the 'darker chapters of Irish history', from cannibalism and plague to Irish involvement in the transatlantic slave trade. A Mayo-born general who rose through the ranks to lead the Argentinian army will also have his story told alongside the tale of the Irish-language printing press in Leuven, Belgium, and the Longford priest who heard the final confession of King Louis XVI. From That Small Island - The Story of the Irish, which is produced by the team behind 1916: The Irish Rebellion, will premier on Sunday 8 June at 6.30pm on RTÉ One and RTÉ Player. According to the promotional material, the show will answer the questions: 'Who are the Irish? Where did they come from? Why does the world turn green every St Patrick's Day?' It is created by writer and fimmaker Bríona Nic Dhiarmada and directed by Rachael Moriarty and Peter Murphy, while actor Colin Farrell is the narrator. It will also feature an original score from Irish composer Colm Mac Con Iomaire.
RTÉ News
3 days ago
- Entertainment
- RTÉ News
Colin Farrell traces 8,000 years of Irish history in new series on RTÉ One and RTÉ Player
Colin Farrell narrates From That Small Island - The Story of the Irish, a new four-part documentary series coming to RTÉ One and RTÉ Player next month. Premiering on Sunday 8 June at 6:30pm, the series will bring to life "the extraordinary story of the Irish people, from the island's very first inhabitants to the global diaspora that now numbers over 80 million people". From That Small Island is created by the writer and filmmaker Bríona Nic Dhiarmada and produced by the award-winning team behind 1916: The Irish Rebellion. Along with filming across the island of Ireland, the programme makers have also travelled "from Barbados to Belgium, Singapore to Switzerland, UAE to the United States". "In the first episode, viewers are taken back to the ancient Céide Fields and introduced to the earliest settlers, including the remarkable discovery of the remains of a baby with the Down Syndrome gene, cared for and breastfed over 5,000 years ago," says the team. "The series then moves through millennia, from the Viking invasions and Christianisation of Ireland to the modern era, all while spotlighting personal stories and seldom-told truths." Highlights from the series include: The television debut of the face of 'Rathlin Man', a 4,000-year-old ancestor whose face was reconstructed using cutting-edge DNA technology. The first written reference to hurling. Darker chapters of Irish history, from cannibalism and plague to Irish involvement in the transatlantic slave trade. Forgotten Irish explorers: a Galway man on Columbus's 1492 voyage and two more on Magellan's circumnavigation. A Mayo-born general who rose through the ranks to lead the Argentinian army. The Irish-language printing press in Leuven, Belgium, and the Longford priest who heard the final confession of King Louis XVI. From That Small Island - The Story of the Irish is a COCO Content production written and produced by Bríona Nic Dhiarmada and directed by Rachael Moriarty and Peter Murphy. It begins on Sunday 8 June on RTÉ One and RTÉ Player.
Cision Canada
6 days ago
- Health
- Cision Canada
Built Green Launches its Schools' Program Pilot
Renfrew Educational Services continues innovating as the first to enrol EDMONTON, AB, May 27, 2025 /CNW/ - Despite Canadians increasing anxiety about the cost of living, political uncertainty and job insecurity, sustainability is increasingly prevalent in the country, propelled by consumer demand and government programs and initiatives. Industry requests over the last few years have resulted in the development of Built Green Canada's Schools' program launch, alongside announcing its first enrolment, courtesy of Renfrew Educational Services. Now more than ever, healthy buildings have become a priority, and there is growing awareness that a sustainably built building is a healthier place to occupy. On average, Canadian children spend six hours a day in school. Beyond the health of the school, its environment affects student behaviour and considers the physical, psychological and social surroundings—important considerations for the overall health of the child. Renfrew Educational Services is a designated Special Education School in the province of Alberta who has welcomed families and children with significant disabilities, including diagnoses such as Autism, Down Syndrome, Cerebral Palsy and Global Development Delays. Renfrew provides unique and innovative programs, services, spaces, technology and equipment. Their interest in having spaces that offer state-of-the art Mind and Movement Rooms, places to accommodate their service dog, and the intersection of creating an environment of wellbeing in a built structure, drove Renfrew's interest in the health of a school building. "We're committed to creating optimal school environments for our students. Part of that is the physical bones of the school, but it extends beyond that. Built Green's Schools' program offers flexibility in areas such as occupant wellness, a section devoted to the wellness of future building occupants and how they interact with and enjoy their space," says Renfrew Educational Services Founder and Executive Director, Janice McTighe. Built Green Canada is encouraging government and industry to participate in the program during this pilot phase. The organization is looking for input from those on the ground. Across all 10 of the country's provinces and its three territories, climate change is integrated into the curriculum from elementary to high school. The path forward has extended beyond the curriculum to the bricks and mortar of the schools being built with key sustainability concepts in mind. This provides the opportunity to move the curriculum to active learning and experiential education onsite. "Built Green is particularly excited to see the schools' pilot launch, especially given we're working alongside Renfrew Educational Services to support the incredible work they do. For us, its an indirect way to reach the students on the importance of living more sustainably," says Built Green Canada's Chief Executive Officer, Jenifer Christenson. The framework of the schools' program takes a holistic approach to development, consistent with Built Green's other third-party certified programs, and focuses on the optimization of health, resiliency, lifecycle sustainability, greenhouse and carbon emissions, green spaces, resource consumption and organizational practices. The BUILT GREEN® program may especially appeal to schools that are smaller and / or rural and / or special needs. "We're thrilled to see Renfrew Educational Services choose to certify through Built Green Canada's Schools' Program: it puts the students first, focusing on building system efficiency and occupant wellness," says Entuitive Sustainable Buildings + Climate Action Team Lead Leanne Conrad. Thank you to those that contributed to the development of the school's program, including Entuitive, Enerspec Energy Consulting, Introba, Kasian Architecture Interior Design and Planning, Remedy Energy Services, SMP Engineering, and Built Green's Technical Standards Committee. Built Green Canada is an industry-driven, not for profit organization committed to working with builders interested in responsible sustainability practices in the residential building sector. The organization began in 2003, and since then builders have worked with us to complete 53,884 BUILT GREEN® certified single family, MURB, renovations, and high density (including multi-storey, residential tower, mixed-use and renovations) projects, small commercial, as well as three community certifications, represented in Alberta, British Columbia, Saskatchewan and Ontario (as at December 31, 2024) Renfrew Educational Services is a registered Canadian charity and designated Special Education School in the province of Alberta. Since 1974, they've welcomed families and children with significant disabilities, including diagnoses such as Autism, Down Syndrome, Cerebral Palsy and Global Development Delays. What began as a modest community kindergarten has grown into a world-class educational leader serving some 550 children each year across four school locations. Thousands more children in Calgary and area also benefit from Renfrew's services offered to school boards, organizations, First Nations and families in the community.
Yahoo
6 days ago
- Health
- Yahoo
Built Green Launches its Schools' Program Pilot
Renfrew Educational Services continues innovating as the first to enrol EDMONTON, AB, May 27, 2025 /CNW/ - Despite Canadians increasing anxiety about the cost of living, political uncertainty and job insecurity, sustainability is increasingly prevalent in the country, propelled by consumer demand and government programs and initiatives. Industry requests over the last few years have resulted in the development of Built Green Canada's Schools' program launch, alongside announcing its first enrolment, courtesy of Renfrew Educational Services. Now more than ever, healthy buildings have become a priority, and there is growing awareness that a sustainably built building is a healthier place to occupy. On average, Canadian children spend six hours a day in school. Beyond the health of the school, its environment affects student behaviour and considers the physical, psychological and social surroundings—important considerations for the overall health of the child. Renfrew Educational Services is a designated Special Education School in the province of Alberta who has welcomed families and children with significant disabilities, including diagnoses such as Autism, Down Syndrome, Cerebral Palsy and Global Development Delays. Renfrew provides unique and innovative programs, services, spaces, technology and equipment. Their interest in having spaces that offer state-of-the art Mind and Movement Rooms, places to accommodate their service dog, and the intersection of creating an environment of wellbeing in a built structure, drove Renfrew's interest in the health of a school building. "We're committed to creating optimal school environments for our students. Part of that is the physical bones of the school, but it extends beyond that. Built Green's Schools' program offers flexibility in areas such as occupant wellness, a section devoted to the wellness of future building occupants and how they interact with and enjoy their space," says Renfrew Educational Services Founder and Executive Director, Janice McTighe. Built Green Canada is encouraging government and industry to participate in the program during this pilot phase. The organization is looking for input from those on the ground. Across all 10 of the country's provinces and its three territories, climate change is integrated into the curriculum from elementary to high school. The path forward has extended beyond the curriculum to the bricks and mortar of the schools being built with key sustainability concepts in mind. This provides the opportunity to move the curriculum to active learning and experiential education onsite. "Built Green is particularly excited to see the schools' pilot launch, especially given we're working alongside Renfrew Educational Services to support the incredible work they do. For us, its an indirect way to reach the students on the importance of living more sustainably," says Built Green Canada's Chief Executive Officer, Jenifer Christenson. The framework of the schools' program takes a holistic approach to development, consistent with Built Green's other third-party certified programs, and focuses on the optimization of health, resiliency, lifecycle sustainability, greenhouse and carbon emissions, green spaces, resource consumption and organizational practices. The BUILT GREEN® program may especially appeal to schools that are smaller and / or rural and / or special needs. "We're thrilled to see Renfrew Educational Services choose to certify through Built Green Canada's Schools' Program: it puts the students first, focusing on building system efficiency and occupant wellness," says Entuitive Sustainable Buildings + Climate Action Team Lead Leanne Conrad. Thank you to those that contributed to the development of the school's program, including Entuitive, Enerspec Energy Consulting, Introba, Kasian Architecture Interior Design and Planning, Remedy Energy Services, SMP Engineering, and Built Green's Technical Standards Committee. Built Green Canada is an industry-driven, not for profit organization committed to working with builders interested in responsible sustainability practices in the residential building sector. The organization began in 2003, and since then builders have worked with us to complete 53,884 BUILT GREEN® certified single family, MURB, renovations, and high density (including multi-storey, residential tower, mixed-use and renovations) projects, small commercial, as well as three community certifications, represented in Alberta, British Columbia, Saskatchewan and Ontario (as at December 31, 2024) Renfrew Educational Services is a registered Canadian charity and designated Special Education School in the province of Alberta. Since 1974, they've welcomed families and children with significant disabilities, including diagnoses such as Autism, Down Syndrome, Cerebral Palsy and Global Development Delays. What began as a modest community kindergarten has grown into a world-class educational leader serving some 550 children each year across four school locations. Thousands more children in Calgary and area also benefit from Renfrew's services offered to school boards, organizations, First Nations and families in the community. SOURCE Built Green Canada View original content to download multimedia: Error in retrieving data Sign in to access your portfolio Error in retrieving data Error in retrieving data Error in retrieving data Error in retrieving data
