It took some time for UK-based author Jon Roberts to realise that his daughter Kya was ‘different’ from other children her age. Kya was diagnosed with autism at the age of two years. Now, she is six years old and in the span of these years, Roberts has learned to appreciate what he calls his daughter’s “beautiful quirks”, while spreading awareness about autism. Roberts also has a picture book to his credit, titled Through the Eyes of Me, based on his experience of raising his daughter. Roberts shed some light on his life as a parent to an autistic child while speaking to Express Parenting.
When and how did you realise that your daughter was a special child?
When our daughter was about two years old, the doctors were saying that she was meeting her milestones, so we didn’t really worry about her progress at the time. We hadn’t any experience in looking after children her age before so we didn’t know how she should be behaving. It wasn’t until we started taking her to Day Care and the local playground that we suddenly noticed the difference between her and other children of the same age.
While the other children were saying words, smiling and playing with their parents, my daughter Kya would look blankly at us with no expression on her face. If we played peek-a-boo with her, she wouldn’t acknowledge us, whereas the other children would be laughing and joining in. When we walked around the park, she would have an amazing fascination with lining up acorns or stones and enjoy running around in circles. She had no (and still doesn’t) sense of danger. She wouldn’t run up to something like the swings; she would just run off and not stop even if we called her. She could easily run out into a busy road if we didn’t catch her in time. We still have to hold her hand or have her on reins if we know we are walking near a busy road or if we go shopping. She loves to be with other children. She would spot a child from a long distance away and make a beeline towards them, but she didn’t know how to interact with them or communicate with them, so she would just stand next to them and follow them wherever they went.
Take us through a regular day in your daughter’s life.
Kya loves going to school; she loves being able to run around with other children. She still doesn’t play with them, just plays next to them. She has some lovely friends. They all look after her. She is busy with her school and loves the routine. When she comes home after school, she spends an hour on her trampoline bouncing up and down and laughing. After dinner, we try and get her ready for a bath and then put her to bed. She doesn’t like going to bed, she is too busy and just wants to stay up with us watching TV. When she does go to bed, which is normally quite late, she sleeps right through the night.
How are you educating Kya?
We are really lucky as she goes to a mainstream school and is doing really well. When she comes home after school, we do her homework together as a family and help her with her reading and writing. During the weekends, we like to go for long walks in the countryside or on a beach. I like teaching her about nature. She also loves swimming, but at the moment she doesn’t follow any instructions, so teaching her to swim is quite difficult.
How has Kya’s autism impacted the father-daughter bond?
I think the bond between us has strengthened and I am totally committed to making sure she gets the best upbringing that we can possibly give her. I worry about her growing up and hope that she gets the best education and makes some lovely friendships in school.
In what ways is raising an autistic child different? What kind of challenges did you face in parenting? With your daughter getting older, are there new challenges cropping up as well?
Things take longer when you are raising a child with autism. You have to be really patient. Things that come naturally to many other children her age like speaking takes a lot longer to happen with our daughter. Even though she doesn’t converse with us or ask us questions, she is starting to communicate by telling us things such as “There is a bird” or “a boy” while pointing at them too.
One huge challenge that we have overcome a few months ago is toilet training; she was in nappies up to the age of five, then all of a sudden she started to use the potty and now, after she turned six, she started to use the toilet. She even takes herself up to the toilet without any prompting. We are so pleased, it’s a huge step.
As she is getting older and stronger, it is becoming a little more difficult to get her to bed at a reasonable time. We have a routine where we all have dinner at the same time, then it is bath time and once she is dry and ready for bed, we spend time with her, trying to calm her by rubbing her feet and reading to her. But this is getting harder to do as all she wants to do is jump around.
To parents and teachers dealing with autistic children, what would your advice be?
My word of advice to parents and teachers dealing with autistic children would be to be patient. Things that may seem simple to us can be incredibly hard for a person with autism. Our daughter gets confused if we ask her different questions all at once. We need to slow down and simplify our questions and be patient and let her answer one question at a time, in her own time.
Also, don’t compare your child who has autism with a child who doesn’t have it. Our daughter couldn’t tell us that she needed the toilet until she was six. We spent years worrying if she ever would be able to tell us, but the day came. We also worried if she would ever talk and again the day came, and we are so happy with her progress.
Tell us more about your book Through the Eyes of Me. What inspired you to create a picture book?
When Kya started mainstream school, the children in her class asked the teacher questions about her, like: “Why is Kya allowed to run around?” or “Why does she flap her hands?” I wanted to create a nice, pretty looking and simple-to-read book explaining her differences and beautiful quirks. I wanted the book to be illustrated simply yet beautifully. Its main purpose is to help siblings, classmates and anyone who knows of someone on the autism spectrum to understand autism a bit more and to answer some of their questions about things that some autistic people might do. Now, as Kya is getting older, my main goal is to make more people aware of autism and to make sure all people who meet and spend time with our daughter understand her and understand why she does the things she does, in a positive way.
Have you also undertaken initiatives to raise awareness about autism?
I have teamed up with a lady, Claire, whose son is on the autism spectrum and who runs an organisation called Spectropolis. She raises money to help improve access to reading materials that develop a greater understanding of autism and support the varying needs of autism families by donating books to families, libraries and schools across the UK. Together, we are hoping to get further funding to donate books about autism to our local NHS trust, so that a family, whose child has just received a diagnosis, can take away a collection of beautiful books to learn more about autism.