What about me? Siblings of children with special needs

Children with special needs are struggling with heightened anxiety during the current Covid-19 pandemic and social isolating rules, but what about their siblings?

A new booklet aimed at starting conversations within the families of special needs children is focusing on helping the often forgotten tripartite. Written by 16-year-old Katie Heneghan whose older brother has autism – and illustrated by Molly Martyn with the help of three of their transition year classmates – the booklet is a resource to help siblings undertake a journey from frustration to understanding.

My Sibling . . . then Me! is well overdue, says the teenager from south Roscommon. “There are three sides to it,” Katie says, “the child with special needs, the parents, and the siblings. There’s nothing out there, absolutely no resource like this out there for kids like me who have a sibling with special needs.

“It’s from the perspective of the sibling, and for ages eight upwards, the age when we begin to question what’s going on here. Why is my sibling being treated differently from me? Or why is Mum and Dad gone with my brother or sister the whole time? It’s not a novel or a book about special needs. It’s a resource to start a conversation in the house.

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“It’s written in stories, so there’s young people in the book telling their story. About their sibling and the special needs they have and the different things that might’ve happened in the house as a result of the difficulties. And how the sibling might solve the problem, or how to start a conversation with their parents.

“I’ve learned that the feelings I would’ve had growing up, everybody has these feelings. But when you’re young, trying to work all this out in those more vulnerable years, it’s not easy.”

I believe the booklet should be given to the family at the initial diagnosis; it's a long and a very tough process. It should be handed to siblings, when parents go home to explain it to their children

Along with her Dunmore Community School classmates – Niamh Nestor, Dylan Coleman and Tomas Ronayne made up the production team – Katie interviewed parents and siblings of children with special needs and, based on the information she received and her own expertise, she wrote the 26-page booklet. She also spoke to the relevant national charities for research purposes and to see what exactly was already available for children like her.

"There was only one resource, and it was specifically for autism, and it was made in America and geared more towards kids in America," explains the two-time recitation/storytelling Scór na nÓg All-Ireland winner.

“You’ll find that it doesn’t matter what the disability is, the siblings in the house are all experiencing the same sort of feelings. There’s hurt, and there’s anger. Because all the attention is on the child with special needs. But what a lot of younger siblings don’t realise is when these children with special needs are first diagnosed, the parents are often told they will never be able to live an independent life. So now they’re rejoicing at everything they do.”

The booklet was produced as part of a national student enterprise competition and is selling well online, at €8 a booklet. All proceeds go towards the running of the TY scheme, and the Sunshine Class in Creggs National School, a special needs facility in Galway for children with severe to profound learning needs.

Katie believes the booklet is also useful for parents, extended family members, teachers and other professionals who deal with children with special needs. “I believe it should be given to the family when you go through the initial diagnosis with your child; it’s a long and a very tough process. It should be handed to siblings, when parents go home to explain it to their children. It’s also necessary in schools, the HSE, and in waiting rooms for CAMHS [Child and Adolescent Mental Health Services] where, as siblings, we’d spend a lot of time. The booklet is selling really well but I am concerned that children like me need to have access to it.”

The current Government restrictions to prevent the spread of coronavirus – including the closing of schools – has left families with special needs in particular difficulty.

“For somebody who likes routine and they like everything being the same and then that is broken up, that causes upset and stress. So parents are doing whatever it takes to try to stop that anxiety so everybody else then has to step to the side. And it becomes a 24/7 thing for the sibling so it’s even harder on us. Especially if they don’t fully understand the special treatment.”

Katie was part of last year’s Roscommon Under-16 camogie team who beat Kerry to win the C All-Ireland. Niamh is an All-Ireland winner too with the Galway under-14 footballers; Dylan is a member of the Roscommon minor panel; Tomas is on the Mayo minor squad; and Molly also plays football for the Dunmore McHales club in Galway.

“The enterprise competition is such a great initiative, encouraging young people to come up with an idea and learning how to run a company. And this project has been such a good education for us. It’s been a real lesson and not one that can be taught in a classroom.”

The booklet includes a constant conversation prompt at the end of each story – What about me? What can I do? So, what is the main piece of advice from the booklet for siblings during the current crisis?

“I think the biggest thing is the discussion – if you have questions, ask your parents and don’t be afraid – but parents have to be honest. You need to have an open discussion and relationship or else there’ll be anger towards the parents and the sibling.”

[ here ]