This Article was submitted by Sadia Batool, mother of Ehlaam. Sadia is the founder and facilitator of Pennsylvania Community Inclusion for All. Find more information about community inclusion on the Facebook group or on the PA Promise for Children website.
My six-year-old daughter, Ehlaam loves to be outdoors. She enjoys going to parks, the pool, and local festivals. But this wasn’t always the case. At age three, when we received her diagnosis of Autism Spectrum Disorder, it was very difficult to step out of the house for anything. Going to grocery stores or even visiting friends and family was accompanied by severe meltdowns. With the support of the professionals working with Ehlaam, connections with other families and the life-changing trainings provided by the Pennsylvania’s Office of Child Development and Early Learning (OCDEL) Family Engagement initiatives, I was able to identify and practice meaningful Community Inclusion–both for my daughter and my family.
The outbreak of coronavirus (COVID-19) not only created a global health crisis but also has a deep impact on the way we perceive our world and interactions with others in our everyday lives. Families of children with special needs are finding it increasingly difficult to explore ways of practicing meaningful community inclusion. As a parent of a child with Autism, I was worried too about possible regression in social growth that Ehlaam had accomplished over the last three years. I knew I had to do something to maintain the skills she had acquired and also to help her understand and adapt to the new world. The biggest challenges were to help her understand what social distancing means and wearing a mask.
These tips helped Ehlaam and I adjust to our new everyday life.
- I revisited the plan I had developed with Ehlaam’s team when we first started practicing inclusion in the community and modified it according to the current situation.
- I had to prepare myself for a tough road ahead. It wasn’t easy before and it wouldn’t be now, but I had experienced firsthand that behaviors worsen before getting better. With that optimism, I embarked on a second round of practicing Community Inclusion.
- I educated myself about the resources and opportunities available in the community during times of social distancing. This was followed by communication and collaboration (virtually) with our professionals at the school and with behavioral support teams. Together we identified places in the community where we could practice safe and meaningful inclusion and set goals for behaviors like, wearing a mask and maintaining a safe distance being the first ones.
- We started off small. The key to effective and safe inclusion was to start small. We started off with some of Ehlaam’s favorite activities, like nature walks and bike riding in our neighborhood. We made sure she interacted with neighbors while maintaining a safe distance. We identified some picnic spots in our area that weren’t too busy and that became her biggest motivator to practice wearing a mask from the car to the picnic area. Having her favorite stuffed toy, Tigey from Daniel Tiger’s Neighborhood also wearing a mask was a huge help in reinforcing her to tolerate a mask. As our county entered the green phase, we started making very short (5- 10 minutes) trips to the grocery stores and used her favorite cupcakes as a motivator and reinforcement to practice social distancing and wearing her mask.
- We used technology. During the lockdown, we connected with our friends and family through Facetime and made sure Ehlaam participated even if it was mostly none to minimal interest from her to connect with someone virtually.
- Expand gradually. As the mitigation orders were lifted, we started backyard meetups with some family members. Ehlaam attended a drive-thru birthday party and another backyard birthday party where everyone had a designated spot for social distancing. Strong reinforcers, like the birthday cake and the goody bag, meant we were able to enjoy the birthday party and work on our goal of practicing meaningful and safe inclusion.
With the increased uncertainty around the pandemic and the ever-changing circumstances if there is one thing that remains constant, it is the importance of social distancing. Families with children with special needs and the professionals working with them need to be creative in finding opportunities for meaningful and safe inclusion. For parents/caregivers, it is also very important to be mindful of their own mental health and make sure they are practicing inclusion for themselves as well.