The First 8 Steps for Tackling This Quarantine for Families Affected by Autism 

by Ellen Fitzpatrick, M.Ed. Programs and Operations Coordinator, Flutie Foundation

This is an extremely stressful time, particularly for families affected by autism at home. At the Flutie Foundation, WE SEE YOU and understand the struggle. This is probably super frustrating because you are trying to maintain your own job/responsibilities, AND feel the pressure to educate/support your child on the spectrum---so give yourself some grace, allow for mistakes, and remember to make time for yourself when you can. 

No one expects you to be your child’s teacher; your emotional relationship and connection with your child may prevent you from having the same type of “instructional control” that a teacher or therapist may have. You know your child best, and will continue to find ways to adapt to this new reality. These are just some things you can aim for along the way.

1.) Keep everyone in the loop.

Keep an eye out for communications from schools. Touch base with your child’s special educator, BCBA/LABA, speech therapist, OT, PT, ABA therapist, etc. regarding activities to do at home that are aligned with your child’s IEP or adult transition goals. You are entitled to this with your child’s IEP and teachers/service providers should be able to answer specific questions and offer strategies for individuals. 

2.) Plan it out. 

Implement a schedule for the day, write it down/use visuals and work through it together. This can be on a piece of paper, a whiteboard, pictures and velcro, on an app, etc. No matter what your situation or circumstance, find a way to add STRUCTURE to the day! Even better--make this a ROUTINE, and stick with a similar schedule each day. This will not only help your child to know what to expect and reduce challenging behaviors, but it will also help you, as the parent, have some boundaries and sanity. 

Some app suggestions: 

Stripes (Checklist and List manager) (free): https://apps.apple.com/us/app/stripes-checklist-list-manager/id844840340

Choiceworks ($9.99): https://apps.apple.com/us/app/choiceworks/id486210964

Visual Schedules Lite (free): https://apps.apple.com/us/app/visual-schedules-lite/id1324068803

3.) Do what they love, and they'll love what they do. 

Remember what motivates your child, and build that into their daily schedule. 

Is it art? Paint, color, get creative! Download the Pinterest app for clever ideas of DIY projects that you can do with recyclables or common household items just to keep things fresh and fun.

Is it the iPad? Put it on the daily schedule multiple times, and place it strategically (i.e. when you have to cook dinner or do some of your own work.) Download different (free) apps each day and switch them out, so they remain “novel.” 

Is it stimming? Encourage them to go to a designated place if they need to engage in repetitive behaviors throughout the day. You will fight a losing battle if you expect the self-stimulatory behavior to stop, but it is important to establish a boundary for you and for them. This can be a huge challenge for some kiddos with autism and their families, and it is important to redirect this stimming behavior as appropriate throughout the day, just as a teacher or therapist would do while they are at school or at their typical day program. Put it in the schedule, or better yet, talk to your child’s teacher/team on ways to address this behavior at home!

4.) Stay active.

Build in time for exercise or movement. Being cooped up at home is tough, but remaining sedentary is only going to make everyone feel worse!

Go outside. Take a walk or go for a hike, whatever is manageable.

Stretch and/or do yoga (this is a great topic for your child’s PT, OT, Mobility Specialist, etc. as they may have individualized plans for your child, or cool resources to try)

Try a fun website to get moving like www.gonoodle.com or www.kookookangaroo.com 

5.) Don't reinvent the wheel.

Don’t be too intimidated to become your child’s “teacher” for the time being. There are simple things you can do to help maintain their skills and teach them new ones. It will be super helpful to provide a unique/novel activity each day to ease the boredom and keep them engaged in some type of learning or play! Utilize free apps and websites. Talk to other parents about what they are doing. Communicate with your child’s therapists or teachers about preferred activities they usually do at school. Mix it up and try to have some fun when you can, but whatever you do, don’t bend over backwards to make it happen. 

This blog includes a list of free subscriptions to websites of educational companies, virtual tours (aka field trips from your couch!), and many unique activities to try at home: https://kidsactivitiesblog.com

This website breaks up activities by age/grade level, and includes some educational video content based on a theme for learning: https://classroommagazines.scholastic.com/support/learnathome.html

This link  is a great resource with social stories, visuals, schedules and first-then boards: https://l.ead.me/bbTE3n

6.) Take it easy. 

Breathe, allow space and breaks. We are all human, disability or not. We all need time to decompress, maybe this means pacing or watching mindless TV; this is a time to be easy on ourselves and others around us. And just because I think it can’t be overstated, go outdoors and get some fresh air.

7.) Consistency matters.

Be as consistent as possible when you are communicating and planning with your child. Follow through when you say something, maintain routines, provide reinforcement for appropriate and expected behaviors. Yes, things are going to change a little. Being flexible is something people with autism tend to struggle with, so allow them time to adjust to this new schedule. If you can be consistent with your expectations, this will reduce anxiety and increase the likelihood of cooperation. 

8.) You're doing great!

Don’t overthink it. Yes, let’s make accommodations to support these individuals during a time like this. Also remember we are all anxious. We are all watching too much tv and increasing our screen time significantly right now. We are all indulging in extra snacks or eating comfort food. Just because they have autism or a disability, doesn’t mean they aren’t entitled to do these things with us. 

No one is perfect! We know there will be challenges and setbacks-- it will be okay. Just do the best you can, ask for help when you need it, and take one day at a time. This is temporary. We can do this!

 

About the Author

Ellen is a former Special Educator and ABA therapist. Before coming to work for the Flutie Foundation, Ellen worked in a private day school for individuals with autism, as a special educator in public school systems in Massachusetts, and as an ABA therapist/Job coach in the home and community settings. She has her Master’s Degree in Autism Studies and Applied Behavior Analysis.

Ellen is married and is the proud mother of a daughter (almost 2 years old) and 2 adorable, cuddly golden doodles! She created this blog to support the autism community as parents and families navigate the isolation that we’re experiencing with the Coronavirus quarantine. She is committed to the Flutie Foundation’s mission of helping families affected by autism live life to the fullest, so this felt like another tangible way to offer support during this challenging time.

 

 

RESOURCES:

Visual timer apps: These are great for managing transitions!

Visual Countdown timer (free): https://apps.apple.com/us/app/visual-countdown-timer/id541364004

Or Visual timer (free): https://apps.apple.com/us/app/visual-timer/id1392401197

 

Schedule apps:

Stripes (Checklist and List manager) (free): https://apps.apple.com/us/app/stripes-checklist-list-manager/id844840340

Choiceworks ($9.99): https://apps.apple.com/us/app/choiceworks/id486210964

Visual Schedules Lite (free): https://apps.apple.com/us/app/visual-schedules-lite/id1324068803

 

Reinforcement app:

Token Board (free): https://apps.apple.com/us/app/my-token-board/id1033833898

 

Educational apps:

Starfall ABCs (free): https://apps.apple.com/us/app/starfall-abcs/id395623983

Starfall Free (free): https://apps.apple.com/us/app/starfall-free/id707189889

 

Social Stories: 

There are so many out there, or you can write your own! Here are a few I found on https://www.teacherspayteachers.com/ (a free website where educators share resources-some free and others at a low cost.)

Visual Schedule

Coronavirus Social Story

We Need to Stay Healthy