I’m Prue Walker, a FASD consultant and social worker, and I’d been planning a blog for NOFASD as a way of sharing information and resources with families and individuals living with FASD. COVID-19 has changed everything. Talking about how to get a FASD diagnosis isn’t so helpful when existing FASD diagnostic clinics take an indefinite break, and appointments with medical practitioners, OTs and speech pathologists go online. So let’s talk about life with FASD in the time of Coronavirus.
It’s a contradiction to say we have a “new normal” because every day things look a little different. Schools have closed for the most part, parents will be waiting to see when they reopen, and families are making decisions about whether their trip to the shops is “essential”. Job losses and retrenchments are affecting so many people, we can’t visit elderly relatives and the likelihood of widespread illness means that day-to-day inconveniences become minor in the scheme of things. For families caring for children and young people with FASD, daily life is even harder than usual – and it’s important to talk about.
We know that in times of crisis, people go back to the basics – food and shelter (and toilet paper) so it’s no surprise that our inclination is to stockpile. Next, we think about our comforts – jigsaw puzzles and veggie seedlings are the next things to sell out. A crisis also brings out the generosity in our communities, and so Facebook is full of Kindness and Good Karma networks, with neighbours offering to pick up prescriptions or drop off essentials to those who are isolating.
When so many people are experiencing greater losses than our own, it’s still important to acknowledge the small losses for our families and ourselves. Not being able to attend a family funeral, a cancelled holiday or school formal, or not being able to visit friends is still a loss. Lori Gottleib in the New York Times writes:
In the age of coronavirus, a child might say: “I’m so sad that I’m missing seeing my friends every day” and the parent, trying to lessen the child’s pain, might say: “But honey, we’re so lucky that we’re not sick and you’ll get to see your friends soon!” A more helpful response might be: “I know how sad you are about this. You miss being with your friends so much. It’s a big loss not to have that.”
COVID-19 is enormously anxiety-provoking, which is even harder when children and young people already live with anxiety. Don’t walk your cat, and other advice for a worried kid is a short social story by Kate McCulley and Jade Amalos designed to help children with their worries. Coronavirus appears in the corner of each page in place of the sun, but as the story progresses, the image shrinks and the pages become lighter and more positive. It looks a little wordy for a child with FASD but, depending on their language abilities, you might find it helpful. If this book isn’t right for your child, you might get some ideas to create your own social story with language and images that your child would respond to. Carol Gray has some templates for creating social stories.
Children and young people with FASD will need to adapt to a new timetable, and families will need to create new routines to support their children and young people. NOFASD’s blog has an extensive list of resources for families in relation to Coronavirus including visuals to support handwashing.
CANFASD also has some suggestions for developing new routines during this time of home isolation, including:
- Trying to build your routine with elements of your child’s usual school routine such as the timing of breaks or snacks
- Maintaining current sleep routines
- Creating visual schedules for the day including downtime, screen time, games etc, and involving children in choosing their down time activities
- Building handwashing into the daily routine.
Alternating school work or more challenging tasks with the activities your child finds the most soothing, relaxing, or stimulating can be helpful. You might create some mini-routines for your child to tick off on a list, using a timer, for example:
- 10 minutes on the trampoline
- 3 laps of the backyard
- Bounce a ball 20 times
- 1 minute patting the dog
- 10 mins at calming table with slime/sand/playdoh
- 30 mins with an audiobook
You may already have created some comforting spaces within the home with pillows, doonas and cushions, but when you are cooped up together you might need to add in some options to create space within the home. Draping blankets over an open ladder or a table to create a dark cubby, or putting up a tent in the backyard can create new spaces – if your child doesn’t find these changes too confronting. If you have access to hammocks, hanging chairs or swings, you could attach a rope and then (maybe!) be able to have a cuppa while you pull the rope, providing you both with a moment of peace.
Online resources abound at the moment, and Storylineonline has hundreds of children’s books, read aloud by celebrities and authors, freely available. You could program a Youtube playlist for your child and set them up in a comfy corner. If you are a member of a local library, you might have a free membership of Kanopy, a free movie streaming service with thousands of films – which you may enjoy as much as your child. It’s important for parents/carers to look after themselves – NOFASD has many helpful hints and I encourage you to use the FASD helpline. Consider joining a Facebook group in your area where people share offers of support – I saw a recent request from a parent whose child will only drink one kind of milk – within a few hours, she had a two week supply. There are many people in the community who are only too happy to collect groceries or drop off prescriptions, and it feels good to be able to assist a neighbour or someone in the community – it’s ok to ask!
Right now, it’s about getting through the day, safely and at home. Be kind to yourself, keep your expectations low, and find moments of calm where you can. And ask for help.
Prue Walker (pruewalkerfasd.com)
Read NOFASD’s COVID-19 blog, complete with resources and ideas for your family.
Read other NOFASD Australia blogs
Prue Walker is a Social Worker who provides FASD consulting services. In 2009 Prue undertook a Churchill Fellowship, travelling to the US and Canada to explore models of care for children with FASD in out of home care. Since that time she has provided training and education to government, organisations, individuals and families to improve their understanding of FASD, and ultimately to improve the service system to better meet the needs of children, young people and families. Prue is the Service Coordinator for VicFAS, the Victorian Fetal Alcohol Service based at Monash Children’s Hospital.