Henry, 10, has ASD

Deborah’s son Henry is 10 years old and has autism spectrum disorder (ASD). Henry’s main difficulties are social ones. From a young age, he was unable to recognise facial expressions, body language, tone of voice, and social rules of play, which made it particularly hard for him to fit in at school.

Henry is at a mainstream school and has a full-time helper with him. Deborah feels strongly that Henry benefits by being exposed to the challenges that come with building relationships with friends every day.

“It’s tough but rewarding, because he is forced to address and grasp crucial life skills about interacting with others and what constitutes a friendship,” she says.

Henry also finds it hard to recognise that his own behaviour can lead to problems. To help him, Deborah draws pictures showing the different situations he finds himself in.

In this way, she is able to help Henry re-examine what happened. He can then assess the positions of everyone involved at his own pace, taking the time to read and understand facial expressions and body language.

As a result, his mother says, “his social life is flourishing”. This technique is similar to those outlined by the National Autistic Society, such as comic strip conversations.

Deborah also found watching the film Temple Grandin – the true story of an autistic scientist – with Henry was helpful, as they were able to watch different scenes and discuss the way people responded to Temple’s behaviour. Henry, who over time has become more aware of his condition, drew comfort from realising he was “not the only one”.

“What has been important to us as Henry’s parents throughout is to make sure that Henry does not consider the ASD as a weakness, but merely part of his wonderful make-up,” says Deborah.

Amariah, 9, has Down’s syndrome

Deborah’s eldest daughter, Amariah, is nine years old and has Down’s syndrome. She studies at a special education school for children with mild to moderate special needs. Although Amariah is learning to read, she only speaks a few words. “Our current goal is to develop this part of her life,” says Deborah.

To encourage Amariah to speak more, Deborah is teaching her how to create sentences using her fingers and through repetition. “For example, every morning when I wake her up for school, I say ‘Good morning, Amariah,” explains Deborah.

“While doing so, I put my hand near her face within her direct line of sight and I raise a different finger starting from my thumb as I say each word. I then repeat the process, saying the first word ‘good’ and then wait for her to repeat the sentence, prompting her with the next word by raising my index finger.”

After only a few days, Amariah was able to say “Good morning, Mummy” when she woke up. “The most rewarding part for me is her smile as she speaks to me,” says Deborah.

To help Amariah carry out daily tasks, such as washing, showering and dressing independently, Deborah creates images to illustrate what Amariah needs to do.

“I took photographs highlighting the step-by-step process that we all follow to get dressed. I laminated them and arranged them in order on a large board, referring to each picture as she got dressed,” explains Deborah. Amariah is now able to dress and shower with minimal support. She is also learning how to eat independently.

Deborah’s techniques for helping Amariah are similar to those used in Makaton, a language programme using signs and symbols that helps people with special needs learn to communicate. As they grow in confidence, most people naturally drop Makaton in favour of speech.

Other family members

Deborah also has twin daughters, now aged four. At the age of 2.5, one of the twins asked why Amariah, then aged seven, didn’t talk. Deborah and her husband chose to explain Amariah’s condition to both girls very simply, encouraging questions.

“Although the twins sometimes get frustrated at some of Amariah’s behaviour, they are extremely patient and kind towards her,” says Deborah. “Recently, I had the pleasure of hearing both girls take Amariah to the mirror to teach her how to clean her face when she had finished eating.”

Henry also likes to act as Amariah’s advocate, explaining to others why it is difficult for her to speak and play appropriately, hoping both adults and other children will be more patient. Deborah says she finds this “adorable to watch”.

In turn, Amariah is especially sensitive towards Henry, cuddling him when she sees he is upset. “For two children who have both had communication difficulties, they have a very strong connection,” says Deborah.

Emotional and practical support

While her children were small, Deborah’s family benefited from the support of Pre-school Teaching Team, an early intervention service for children with complex special educational needs and disabilities, available through the local council. “Their guidance, support and regular play therapy sessions in our home were very educational and insightful for me,” says Deborah.

When Amariah was born, Deborah joined a local support group for parents of children with special needs. “It was a safe place that I was able to turn to, where I felt comfortable to cry or share painful experiences. I have always been of the opinion that a calm mum makes for calm children,” she says.

In dealing with the challenges of her children’s conditions, Deborah found the most helpful responses came from those family and friends who listened “and gave me a hug when I needed it most”.

She also feels it is important that all families take the time to teach their children why some people appear or behave differently. “When children are taught about these differences, they have patience and understanding,” she says.

As a parent of two children with special needs, Deborah has spent a lot of time with doctors and specialists. “I never met one medical professional or therapist on the NHS who was unkind or unsupportive, although it was clear that their resources were restricted,” she says.

Parenting children with special needs

“I am in awe of my children’s inquisitive and happy dispositions, and ultimately their ability to melt the hearts of anyone they come into contact with,” says Deborah, with obvious pride.

She adds her children have taught her the art of patience – for such a busy person who finds it hard to relax, this is an important lesson to learn. “Life for all of us is so hectic and rushed. When I teach my children, nothing can be rushed. If it is, then they are unable to grasp what I’m teaching them and become unhappy and frustrated.”

Finding out your child has a learning disability can lead to many fears and questions for any parent. While Deborah struggled when her children were first diagnosed within a year of each other, she says it does get easier.

“If you are in the midst of such pain, go easy on yourself and remember to take everything step by step. Trust your instinct in all decisions and you will make it through.”