A report last year from the National Council for Special Education found that 14,000 students have an autism diagnosis — that’s one in every 65 students or 1.5% of the school population. A 2013 study estimated that there was a one in 100 autism rate among children.
Autism spectrum disorders (ASD) are characterised by difficulties in social interaction and communication and a restricted, repetitive repertoire of interests and activities. Global studies have estimated that one child in every 160 has an ASD, but the World Health Organisation says recent studies have reported a substantially higher rate.
There is no shortage of literature on autism. Google it and you’ll see for yourself. However, for parents who are trying to balance everyday life with the needs of their child, a text-heavy read at the end of a long day may be more hindrance than help.
Tony the Turtle books stem from a simple concept that is making a big difference in the lives of children on the spectrum and the families who care for them. They are the brainchild of Cork home tutor Valerie Sheehan and offer parents, children, and carers tested, positive strategies to support everyone in getting through everyday activities with reduced anxiety and minimum stress.
The Facebook page describes them as ‘story books for children who see and feel the world differently and helpful tips for their parents’.
Author Valerie knew she wanted to work with children after a spell of work experience in Lota, Brothers of Charity, Cork, when she was 16 and in transition year. She befriended a young boy with Down syndrome and said he was the kindest child she had ever come across. Although she didn’t know it at the time, the same child prompted her towards her future career.
After studying social studies in CIT, she did a work placement in Enable Ireland and worked in a homeless shelter. She then became a special needs assistant and spent nights studying for a Montessori degree, focusing on special education. After obtaining her degree, she went out on her own as a home tutor for children with autism. She has worked with over 40 children and says she has learnt something new with each child.
Through her work, she discovered a massive lack of resources in the area and began writing little stories to help families after the initial diagnosis. The feedback was very positive.
“I started to go into a little more detail, then I began to make them rhyme and they began to snowball after that,” she says, adding that the name Tony was inspired by her father, who died three weeks after the first books were published.
“I was thrilled my dad got to see them and to know he would be forever immortalised as a turtle. I wanted the main character to have a shell so I could show the significance of the child coming in and out of his shell when his environment becomes too overwhelming.”
The concept of the books is that ‘everybody learns’. The child identifies with the character, the parents can plan for their day — for example swimming, park, shopping — by learning tips to help make the activity less challenging. “Not every book works for every child but I’ve been a tutor for 12 years and I’m always learning. Kids teach me, I learn from them,” says Valerie.
“Many children with autism get their sensory issues mixed up, they are not filtered properly. For example, lights and noise in the supermarket can be painful and they cannot block them out so they go into their shell. And these books teach that sometimes ‘going into your shell’ is OK, is the right option.” While Valerie encourages parents to help their child out of his/her shell, there will be times when it is necessary and helpful for the child to stay in.
“Going in to your child’s world instead of getting them to come into yours is as important as coaxing them out.”
It won’t take too long to figure out what upsets or triggers your child so you can do things, where possible, to avoid your child getting too overwhelmed. The book features recurrent themes which are learning tools for parents to help daily activities — including haircuts, parties, and toilet training — run smoother.
There is a strong emphasis on the visual aspect of the books, which Valerie says can increase independence and reduce anxiety.
“Visuals help children on the spectrum as they clearly indicate what has been completed and what must be done next,” she explains, thereby reducing the amount of stress and anxiety in a child. They can also help communication skills.
“Tony uses visuals in all the stories with his day plan, First and Then chart, feelings, and learning to wait his turn. Once using visuals become part of your daily routine, you will see a big difference.”
Valerie says she has only received positive feedback and was delighted when renowned author and speaker on autism, Dr Temple Grandin, sent her a message praising the concept. The books also got a ringing endorsement three years ago when they were mentioned on the Late Late Toy Show.
Going forward, she would love to get the books in mainstream classrooms. “These books are not just for children with autism, and other children may be able to understand more if they read books like this — they are for every child and encourage inclusion and integration.”
- Tony the Turtle books are stocked in Waterstones and can also be bought online (tonytheturtle.com or see Facebook.com/tonytheturtlebooks)
Sam Scriven and her son Ollie, 4, from Cork
- “Ollie was diagnosed early and we started intervention at the age of two and we met Valerie through the home tuition programme. Through her work with Ollie, she directed us, took us all on board and he simply flourished. The more we did, the more we realised he does understand. She sees him every week and he also goes to Sonas in Carrigaline.
“Valerie introduced us to the Tony Turtle books and we read them with all the children (Sam also has Lucy, 7, and Charlie, 3, as well as a grown-up daughter).
“It’s not just for children with autism, it helps the other children relate to Ollie. Like Charlie craves interaction with his brother, and we can read it together at bedtime — it’s hard to explain to kids about autism, these books help with that.
“Our lives are so hectic — we need to slow it down, take it back. Reading the book at night, we can plan the task for the next day — park, swimming, shopping — bringing the activity into everyday life and prepare the child for it. They like to know what’s coming around the corner, they need coping mechanisms and a planned schedule.”
Sam, who studies in UCC, is a firm believer of inclusion for children on the spectrum and believes getting books like Tony the Turtle introduced into schools would be a positive development.
“Children need to understand autism, it needs to be the norm so that children with autism are not ‘outsiders’ in mainstream schools.”