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Nico’s autism and ADHD

Photo: Read Nico's story

With three children each with very different needs, life at home for Susana and Jacobo is hectic. But understanding seven-year-old profoundly deaf Nicolas’ autism and ADHD is bringing calm to the family.

Supporting profoundly deaf Nicolas (7), hearing Gabriel (6) and Sofia (4), who’s also profoundly deaf, keeps parents Susana and Jacobo on their toes.

“Gabriel hears everything we say – we know how to communicate with him,” Susana explains. “Sofia has some speech but prefers to sign – the trick is getting her attention.

"He shows his feelings in unexpected ways."

”Communicating with Nicolas is trickier, though. His ADHD (attention deficit hyperactivity disorder) and ASD (autistic spectrum disorder) bring a different dimension to his deafness.

"If he’s having a tantrum, communicating with him is tough; he’ll run around screaming, then disappear into a corner and we can’t get his attention. His behaviour then has an impact on the other children,” says Susana.

Dad Jacobo explains that Nico’s behaviour is unpredictable. “Sometimes we think we’ve found something that Nico enjoys and that calms him down. We tried horse riding and swimming, but sometimes he’ll suddenly change his mind about an activity and his behaviour becomes challenging again.

“If Nico feels uncomfortable – for example, around lots of people – he’ll run away to somewhere quieter. Sometimes he tries to interact with people, but he shows his feelings in unexpected ways. He might pinch his brother or sister when really he wants to play.

“When Nico was diagnosed as deaf shortly after he was born, it was a lot to take in,” Susana recalls. “It was much later that we got Nico’s autism and ADHD diagnosed. Understanding about deafness was one thing, but realising there were separate behaviour issues answered lots of questions.”

When Sofia was also diagnosed as deaf, the family needed more support. That’s when they discovered the National Deaf Children’s Society.

“We attended a Newly Identified weekend shortly after Sofia was diagnosed. The main thing we learnt was the local support available – we were excited to meet other families nearby through our local deaf children’s society.

“The National Deaf Children’s Society’s Parenting Course for families from a BME (black or minority ethnic) background was also a milestone – we were put in touch with someone who could advise us on parenting a child with deafness and additional needs.

“The ideas and behaviour strategies we took from the ten-week course built our confidence as parents. Immediately the tantrums lessened. We’ve learnt to be firmer, give clearer direction, go to the children’s level to communicate.

“Since the course, we’ve explained Nico’s needs to Gabriel and Sofia. Now they’re beginning to understand why we treat Nico slightly differently.”

"His behaviour has improved and he listens to us more."

The next challenge is knowing when Nico’s behaviour is caused by his deafness or additional needs and when it’s not. “When we found out about Nico’s additional needs, we’d often say ‘let him do it – it’s because of his autism’. But he’s clever and sometimes takes advantage of that.

"We must find a balance between meeting his needs and not letting him pull the wool over our eyes! Now we know that Nico eating too many sweets or pushing his sister is nothing to do with his deafness or other needs.

“His behaviour has improved and he listens to us more. All three children are starting to understand boundaries and limits. Maybe soon we’ll get to the stage where we can go on a family holiday!”