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Getting the best support I can for my twin sons

 

Catherine, Zackary and Harry’s StoryHaving twin sons means double the love for Tameside mum Catherine Krupinski.

But it also means double the effort and dedication in securing the very best options for their future.

Her boys Zackary and Harry, now aged 23, were born with fragile X syndrome – the most common known inherited cause of learning disabilities, affecting around 1 in 4000 males and 1 in 8000 females.

It can cause a wide range of difficulties with learning, as well as social, language, attentional, emotional, and behavioural problems.

Catherine, a retired deputy head teacher from Ashton, has spent many years endeavouring to get her sons the best available support.

She said: “All I want for them is to be able to live as full, active and independent lives as possible – lives that are meaningful and have purpose and where they can mix socially.”

The family is supporting Tameside Council’s campaign to raise awarenesss of the Local Offer  – which can be accessed on the Tameside Council website at www.tameside.gov.uk/localoffer and should be the first port of call for anyone who has concerns about their child’s development. It is aimed at all families who feel their children may need some extra help because of additional needs – these could be emotional, physical, behavioural and/or medical and anything from difficulties learning to read to a profound disability.

The Local Offer was introduced to make it easier for families to make informed decisions and access services and support available for children and young people with special educational needs and disabilities. Parents and carers are encouraged to seek advice as soon as they identify any concerns so that children can receive all the support they may need from the earliest opportunity.

Catherine, a retired deputy head teacher, told how she first realised Zackary and Harry had issues when they were toddlers and not meeting expected milestones.

She said: “I noticed that at the age my older daughter had been walking, they could barely sit up and at the age she had been talking, they weren’t even babbling. Health visitors and my GP initially thought it was because they had been born five weeks prematurely – and that they were boys – but as they got older the developmental delays got all the more obvious and concerning.”

After months of observations and tests, the boys were eventually diagnosed with fragile X syndrome. Little information was available on the condition 20 years ago, but Catherine found The Fragile X Society an invaluable resource of information and support.

Her next steps were to ensure the twins received the right support for their condition at nursery school and as they continued their education.
“It’s so important you research all your option to ensure your children’s needs are being met as best as they possibly can be. It can feel like quite a battle at times but it’s worth it if you can get them in the right setting with the right support.”

The Local Offer continues to support young people when they leave school up until the age of 25. Zackary is currently on a pathways to employment course at Tameside College three days a week and spends two days a week with a theatre group in Huddersfield. Harry is on a supported internship at Tameside Hospital, working with medical supplies.

Catherine said: “They are both enjoying what they are doing, although both will finish their placements in the summer. Ideally for the future it would be nice to get them into some supported employment role where they can continue to learn, earn a little money and develop as much independence as possible.

“Nothing is straightforward and there are always questions marks over what happens next but I’m looking into our options and will continue to do what I can to help get the best for Zackary and Harry.”