At home, It’s difficult to explain Covid-19 to any young person, but it can be even more challenging for a child on the spectrum, Valerie Sheehan’s short story about a little turtle with autism will offer reassurance, writes.
Since shut the attempting coronavirus, schools their doors the around ultimate last parents the month country juggling have due been to act, keeping their children occupied, handling an increasing load of housework, with many also working in frontline jobs or remotely.
And while uncertainty has become the theme of all our lives now, it is a particularly challenging time for families of children with autism, who often rely on routine and structure to maintain their equilibrium.
Valerie Sheehan has more than 15 years of experience as a home tutor working with families and kids on the autistic spectrum. As part of that work, she started writing ‘social stories’ to help families after the child’s initial diagnosis.
After positive feedback from parents, she decided to self-publish some of the stories in 2014, and the Tony the Turtle series of books was born.
Sheehan, who is based in Blackrock, Cork, wrote the books to help parents and children navigate everyday activities that a child with autism may find overwhelming, and she says Tony also gives the child a voice and character to identify with.
As she writes in one of the books:
Sometimes the world is too much for Tony, and he needs to hide away in his shell.
Now Sheehan has published a new installment of Tony’s adventures, called Tony Stays At Home, to help families of children with autism who are facing the additional challenges of isolation and lack of access to services due to the Covid-19 restrictions.
Sheehan has been a special needs teacher at Scoil Eanna in Montenotte since last September and no longer tutors children with autism, but she says all children with special needs face particular chal- lenges at this time.
“The way we teach, it’s very concrete, you literally how it came about in a day. I put it up on Facebook and sent it to the parents of the kids in my class, and I couldn’t believe the response.”
Parents have been in touch with Sheehan saying they have been finding the current situation incredibly challenging and difficult.
“Some days they get lots done, other days they get nothing done,” says Sheehan.
“I tell them to go with that and to follow their child’s needs. The biggest challenge is being out of routine — and creating a new one in a short space of time.”
This is echoed by Laura Crowley, director of educational support services for Cork-based charity Shine Ireland (Irish Progressive Association for Autism). “The lack of structure and routine is the biggest problem for children on the spectrum.
Also, for a lot of the kids, they can’t comprehend why they can’t go to school, why they can’t see granny or granddad, or their childminder, or whoever it may be that is special in their lives.”
Crowley adds that while many parents and schools are relying on online learning, this isn’t always the best mode for children with autism and special needs.
“A lot of teachers and schools are trying to reach out online but for many children on the spectrum, that kind of online support isn’t going to be suitable because to be able to get their attention online and keep it, is not the same as doing it in person. They won’t be able to access the curriculum in the same way.”
However, Shine has launched online support for parents of children who usually attend the centre’s early learning unit, featuring practical and educational resources to help parents engage with their children.
“It’s a difficult medium for our children but we are trying to make it as accessible as possible,” says Crowley.
You can’t say ‘open Sheehan also emphasises that learning doesn’t have to be school work as such.
“It could perhaps be three activities — one of those could be PE, one could be cleaning the bedroom, it doesn’t have to be sitting at the table. Play some games, teach them to tie their shoes if they can, or to get dressed themselves if they can without too much help"
She adds that parents should not put should put pressure on themselves to have up schoolwork in what are unprecedented times.
Home isn’t meant to be school, and trying to create a school at home is taking away the kids’ safe place and putting pressure on all the time
And parents aren’t teachers. You’re trying to be a mum or dad, to be a teacher, your own relationship will suffer because you’re cross they’re not doing two pages of maths. And it’s hard for them too because they’re not in school.”
Sheehan says it is important to give a child choices and some sense of control.
“What I’ve proposed to parents is to say, ‘first we’ll do some work with a visual chart, then we’ll play some games’. Then you give control back to the child — it’s the ‘first, then’ method. You’re telling them, ‘first work, then games’.”
According to Crowley of Shine, emotional literacy at a time like this is also incredibly important for children with autism.
“They need to be able to express what they are feeling, understand what they are feeling and cope with they are feeling. I would say to parents that it is not about not trying to fix their children’s emotions at this time, just to be with them in their emotions, guide them through it and demonstrate how to manage them.
"No parents should put pressure on themselves to fix everything. You want them to be happy but the truth is none of us are happy 24 hours a day and in this situation, especially, we all have such mixed emotions and confusion.”
Sheehan says she has found it incredibly rewarding to write the book, which she hopes will be helpful for any child or parent who is stressed or anxious at this time. It is also a means of connecting with people beyond the confines of the coronavirus crisis.
“It’s lovely that it’s helping so many people, I’m thrilled. It is a book for everyone, we can bring it back to all our lives. I’m recording myself reading it tonight for my own class — I’m changing the names in the book to their names. I miss them so much. Every teacher in the country would prefer to be in school, it’s very hard for everyone.”
Top tips for families
■ Try to have some sort of routine every day. www.littlepuddins.ie has some great free resources around visuals and schedules that you can print off at home. There is also a really good social story about Covid-19 for kids who may have limited levels of language on www. theautismeducator.ie
■ In times of uncertainty like this, children on the spectrum can get very caught up in the risks and dangers of what is going on. Only tell them the facts that pertain to them.
■ Often, children on the spectrum are prone to anxiety, and catastrophising is one of the things that comes with that. If they start to ask ‘what if this or that happens?’, try to redirect their attention to the good things that are going on, for example, the amazing work that is being done by the nurses and doctors and other frontline workers. Tell them we are doing everything we possibly can and we will come out of it.
■ Try to work on a week by week basis; say, ‘this week the school is closed, we will find out on Friday about next week’, just to give them as much certainty as you can for the time being.