By Rebecca Turley
Any family with a child with autism can tell you – even if the sky is falling just outside your front door, it seems like there is always more important things to think about and more pressing matters to take care of right in your own home. But this time it’s different. Hardly anyone has gone completely unaffected by the COVID-19 outbreak and the ensuring closures to schools, businesses, and – everything else.
The events of the day have piled on a lot of extra stuff to worry about. If you’re lucky, it’s just the rigmarole of having to figure out the whole work-from-home thing that you’re having to contend with. But it’s also entirely possible that you or your spouse might be dealing with a layoff (fingers crossed, it’s only temporary!)… On the bright side – at least now you can add ‘homeschool teacher’ to your resume.
Chances are good that the COVID-19 pandemic has left you and your family scrambling to adapt your lives to stay-at-home orders in a hundred different ways. You’re establishing new routines, ensuring the continuity of your child’s support services, and finding ways to manage your child’s behavior and avoid the meltdowns that often result when a child with ASD is faced with unplanned disruptions and a looming sense of uncertainty about what comes next.
But you’ve got this. You’re no stranger to adversity, and you’ve never been one to back down from a challenge. After all, you’ve been your child’s fiercest advocate from day one – even if the sky really were falling you’d get out there and hold it steady without a whimper if that’s what it took to protect them.
That resiliency has prepared you for the challenges you’re going to be dealing with now… like finding new routines that put order back into your life, making sure the kids stay up on their schoolwork, and learning how telebehavioral health services can bring your ABA into your living room at a time when you can’t go to them.
But a pep talk isn’t really what you need right now. As a parent raising a child with autism, you’ve already got all the courage and motivation you’ll ever need to get through this. What you do need, though, are some tools that will help you manage your new work-at-home, school-at-home, everything-at-home life.
The New Routine Should Be as Close to the Old One as Possible … But with Even More Exercise and Outside Time
Routines are good for more than just keeping your child from coming unglued; they’re a must for achieving a sense of normality for the entire family. Your best bet is to establish a routine that’s as close to your child’s typical school day as possible. Chances are that’s the routine the entire family had been following anyway.
We recommend putting together a visual schedule to get everyone on the same page. Couple this with pre-programming the alarm on your phone with start and stop times for the various events of the day and you have the total framework in place for a well-structured “school day”.
Even under perfect circumstances, nobody would expect this to go perfectly according to plan. But the idea is to achieve some basic sense of structure in the day, not perfection. And if you have a child whose entire mood seems to depend on that kind of structure and predictability, you might be surprised at how smoothly the day ends up flowing once you put the plan into action.
A typical schedule for a grade schooler might look something like this:
- 8:00-8:30AM – Breakfast
- 8:30-9:00AM – Daily chores (getting dressed, brushing teeth, cleaning up the breakfast dishes)
- 9:00-11:30AM – Schoolwork (may be best broken up into small blocks of time)
- 11:30-12:00PM – ABA therapy
- 12:00-1:00PM – Lunch
- 1:00-1:30PM – Reading time
- 1:30-2:00PM – Physical exercise
- 2:00-3:30PM – Downtime (television or device time)/playtime/craft time
- 3:00-4:00PM – Speech/occupational therapy
- 4:00-5:00PM – Schoolwork
- 5:00-6:00PM – Dinner
- 6:00-8:00PM – Family time
- 8:00-8:30PM – Bathtime
- 8:30-9:00 – Reading time
- 9:00PM – Bedtime
For many families, it may help to start small by just scheduling in the major event-shifts – like starting school, then taking a recess, and later a lunchbreak. You can then build on that basic schedule by adding another event each day. There’s no need to complicate it by splitting the day up into tiny segments. Just do what makes sense for you and your family.
Allow your children to get involved with the planning so they feel like they’re part of the process.
Physical activity and outside time need to be part of your schedule. Fresh air and a change of scenery is critical to anybody’s mental and emotional health, no matter who you are or what’s going on in the world. After a lot of time pent up in the house, a bike ride around the neighborhood can feel like a broom-trip to Hogwarts and back. Not only does it boost everybody’s mood and re-awaken their perspective on this big, beautiful world after spending hours inside the same four walls, it creates a natural reset that provides the perfect transition to the day’s next event – whatever that might be.
There’s plenty of ways to make physical exercise something everyone in the family looks forward to. Consider:
- Setting up a treasure hunt in the backyard
- Playing “I Spy” on a neighborhood walk
- Creating a scavenger hunt for your next trip to the park
- Trying out family-friendly yoga routines on YouTube
- Creating an indoor obstacle course
Creating and implementing a schedule that works may not be easy, so be patient and be realistic and assume that there will be some bumps along the way.
Most children on the spectrum are resistant to change, so it’s important to be prepared to deal with some initial reluctance to adapt to a new way of doing things. As much as you try to stick to a familiar routine, your child will surely remind you a hundred times that this isn’t how their teacher does it.
The National Professional Development Center on Autism Spectrum Disorder and the Frank Porter Graham Development Institute developed a packet entitled “Supporting Individuals through Uncertain Times” that’s full of ideas and suggestions for navigating this challenging time.
Don’t Let Interruptions in Behavioral Therapy Derail Your Child’s Gains
If you haven’t done so already, talk to your child’s ABA therapist about continuing services through telehealth.
The basics of handling this two-way, real-time, interactive form of remote therapy between your child and their ABA will be familiar to anybody who has ever made a Skype call. It’s a very basic part of any therapy continuity plan that often makes use of standard video conferencing platforms like Zoom that most of us are already familiar with.
If your ABA is a little more telehealth-savvy, then they are likely already ahead of the curve, and may be using more secure and feature-rich platforms like TheraNest or Doxy which have been purpose-built to support the services therapists and healthcare professionals provide.
The most complicated part of it all is likely to be just getting your child used to the idea that they’ll be doing pretty much the exact same things in these remote sessions as they did in the ABA office.
Telehealth has become hugely popular, well before coronavirus was even a thing. After the first session, both providers and patients find they immediately appreciate the convenience and flexibility of handling basic services remotely… all the service, none of the commuting and sitting around in a waiting room.
Even though COVID-19 stay-at-home orders are responsible for the current rush to telehealth ABA services, this form of real-time, online therapy will likely find its footing in the months ahead and eventually even become the preferred method long after the pandemic has abated and quarantines have been lifted. With insurance companies in many states now covering remote services, telehealth is here to stay, and could become a normal part of your daily life for years to come.
If you have a wi-fi connection that’s been good enough to stream Stranger Things and a device with a built-in camera and microphone (smartphone, iPad, tablet, or laptop), then you already have everything you need to get started. Some video platforms require a download, but in most cases your provider will send you a link that you’ll click on to connect at the time of your appointment.
For most people, the transition from in-person therapy to telehealth is a fairly easy one, and studies have found it to be just as effective as therapy that takes place in-person.
Even if your child is unwilling to participate at first and squirms right out of the room as soon as your ABA’s face shows up on-screen, it’s likely your ABA will end up giving you a course on what you should be working on at home to ensure your child continues to progress. Even if it takes a little work to get your child used to interacting with a real-time video stream, it will be time well-spent in keeping faces familiar, making sure your therapist is current on where your child is in their progress, and ensuring you have the coaching you need to support your child’s behavioral plan.
Get Excited About Homeschooling – You’re Actually Likely to Have a Lot of Professional Support Available to Help
No matter what you might do for a living, you may be feeling under-qualified in your new role as de facto homeschool teacher. And chances are, even if you had been relying on some in-home help, that help is now hunkering down in their own home right now and can’t be there to support your homeschooling efforts.
You might be taking up a lot of slack right now in handling the day-to-day of it all… but you still have some skilled professionals to help you pull it off.
Reach out to your child’s IEP team to figure out how and when your child’s special education services will be shifted online during the closure. Keep the lines of communication open with the special education team and ask them to provide you with techniques you can implement at home. Ask for a schedule of your child’s typical school day so you can recreate a similar routine at home. For example, if your child’s day begins with reading, make reading the first part of your at-home schooling day, too. You’ll find that small steps like this will have a big impact on how quickly your child adjusts to the school-at-home model.
Take cues from your child. A schedule is important, but so is abandoning that schedule—if only for a short period of time—if your child is showing signs of stress and anxiety.
Be the Reassuring Voice Your Child Needs Right Now
News of the coronavirus is everywhere we turn, which means our children are hearing about it almost as much as we are. Combine this with a sharp shift in the routines they’re accustomed to and the people they ordinarily see and it’s easy to see why children need some extra reassurance during this stressful time.
Don’t assume your children aren’t aware of the coronavirus, and don’t make the mistake of trying to shield them from the topic. Instead, pull the emotion out of it and stick to the facts. As you likely know better than anybody, this approach is something that many kids with autism understand and relate to a lot more than a conversation loaded with emotion and colored by parental anxiety.
It’s a lot better to be honest than having to walk back false assurances. When your child presses you for a timeline, it might be tempting to say, ‘everything will be back to normal in a week’ even though you already know the minute that week rolls around you’ll be on the hook for an explanation. Be up front, and save yourself the drama. If your child finds comfort in the predictable, you may have always made a point to give definite answers to ‘when’ questions. But in light of the current situation, a conversation about uncertainty might be unavoidable.
Most of all, keep it simple; too much discussion can lead to increased fears and worries for everybody. Talk about what your family is doing to stay safe and healthy, and use the resources available to you to facilitate those conversations… National Autism Society offers a printable handwashing guide that you can pin up by the sink… and the National Autism Association, Autism Speaks, and Little Puddins all provide great illustrated social stories about the coronavirus to get the conversation started.
Commit to Self-Care
You may find that you’re so busy making sure all the moving parts of your day are set into motion and running smoothly that you’ve neglected your own mental and emotional health.
Now more than ever, it’s a good idea to refocus your energy and give your attention to the things in your life that really matter. This seems to be something that’s coming naturally to people right now. With all the terrible things going on in the world, we can’t help but reflect on our priorities and think about those parts of your lives that give us a sense of purpose and fulfillment. It’s an unprecedented time, and certainly a tragic one, but in this moment, no matter how brief it might be, it’s starting to feel like we all get it.
Bringing yourself and those around you a sense of peace and calm during the storm might just mean doing something as simple as calling or FaceTiming people you love to let them know you appreciate them and that they’re on your mind. If you’ve ever gotten a call out of the blue from an old friend or a cousin you haven’t talked to in way too long, then you know how good it feels. If you’ve always found a reason not to make a call like that yourself, what you may not know is how good it feels to be the one to initiate it. The simple and free gift of reaching out to an old friend or family member could end up being the most therapeutic thing you do for yourself right now – and for them.
Certain things in your life are going to get bumped down the priority list as you adjust to the new normal, but don’t let important things like exercise and meditation be one of them. And even at a time when stress-eating is perfectly understandable, keep in mind that there’s never a more important time to maintain a healthy diet than when you’re feeling stressed out. The self-discipline alone will be a huge mood-booster.
If you’re struggling with overwhelming stress or anxiety, don’t hesitate to talk about your feelings with close family and friends, and seek the guidance of your therapist or primary care physician. Telehealth isn’t just there to bring ABA services to your child, it also gives you ready access to quick and easy consultations with professionals that are available to help you.
The Centers for Disease Control (CDC) provides a helpful resource aimed at stress and coping during the COVID-19 crisis, and Mental Health America offers a wealth of excellent mental health resources, including online support groups, webinars, workshops, and articles.
The Autism Society launched a Facebook Live Coronavirus Information Series dedicated to providing current and topical information about COVID-19 and its effect on the autism community, while the Autism Speaks’ Autism Response Team offers support services via phone, email, and live chat.
Maybe the one thing we all come out of this situation with is a sense that we all have a common bond, even if only through the shared experience of going through this pandemic. And maybe this sense of community can be a reminder that even as we’re all hunkered down and confined to our homes, we’re really not all that alone in the world.
Rebecca is a full-time writer and editor with a BA in Journalism and Communications. Throughout her career she has contributed to high-profile websites and blogs related to education, healthcare and psychology.