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Going to Virtual School with an Intellectual and Developmental Disability: A Parent’s Perspective

Cardinal Innovations Healthcare — August 17, 2020 — 5 min read
Tom Wilson and his wife Tracey Craven have four children. Two of them are diagnosed with intellectual and developmental disabilities (IDDs). His daughter Arya, who has Down syndrome, continues pre-kindergarten this school year. Their sons are in second and 10th grades. Their oldest daughter, who also has an IDD, graduated in 2019. Tom, who is an IDD Care Coordination Manager for Cardinal Innovations, shares his family’s spring experience with virtual school and their concerns about the new school year.

In the spring, Arya, who is 4, had not been to dance class in person in the two months since the pandemic started keeping us at home. 

I was excited to see her participate in a virtual Zoom version of her favorite activity. I sat down at the top of the stairs and got my phone ready to take a video. She loves all things dance: the music, the outfit, the pageantry, getting her hair done in pigtails that swing as she spins. And she absolutely loves her dance teacher, Miss Kim. 

Almost immediately I was saddened to see there would be no cute dance video today. 

Arya had a complete meltdown in front of my wife’s laptop. Virtual dance class was not the same for her. She didn’t get to see Miss Kim and get a hug. She didn’t get to see her friend Eleanor. She had trouble following along with the instruction on a 17-inch screen. It was a disaster for her – with an activity that she absolutely loves.
Arya on a laptop doing virtual school
(Arya learning virtually)

Adjusting to Going to Class and Therapy Online Isn’t Easy

Now imagine going to pre-kindergarten virtually like Arya did the last three months of the 2019-2020 school year. Arya’s teacher, Ms. Patrick, tried. She really did. She’s a great teacher and Arya loved her. 

But try getting a 4 year old with Down syndrome to understand that school is now different; dance is now different. Neither involves getting your backpack or dance gear and heading for mom’s van anymore. We’re not going to school anymore. Now we’re going to the dining room to see Ms. Patrick on mom’s laptop. 

Yeah, it was a meltdown. Every. Single. Day. 

Then there are her virtual therapies. Getting Arya to sit still in front of a screen while her speech therapist tried to get her to sound out words was more Jiu Jitsu than parenting. She was over it the first virtual session in the spring. 

There were more sessions to follow. We tried to get her to engage for about 15 minutes and then spent the remaining 15 minutes talking to her therapist about goals that were not being met. There was really no good way for Arya to engage with her Individualized Education Program (IEP). 

We used books and games – both the old fashioned paper and cardboard type as well as virtual tools using her Kindle Fire – to supplement her education. Despite all the challenges we faced, Arya’s vocabulary and speech are growing. 

Another bright spot to social distancing and staying at home is that Arya is now almost completely potty trained. She wasn’t making progress in that area while in school, but with us staying at home we’ve been able to implement an effective schedule there and it has been largely successful. 
Arya at dance class     
(left: Arya at dance class | right: Arya on a swing)

Heading to School Online Again, Wondering What the Future Holds 

As we head back to school online again for the 2020-2021 school year, we don’t know what to expect other than that the first nine weeks (at least) will be virtual. 

We don’t know what options will be offered after those nine weeks are up. And, honestly, even if in-person learning were an option, we’re not sure we would pursue it. We probably wouldn’t. 

In addition to Down syndrome, Arya has a congenital heart defect and had heart surgery at three months old. With the understanding that COVID-19 impacts multiple organ systems including the heart, we simply cannot afford to risk her exposure and further damage to her heart. 

Then there are our other children. We have a son going into 10th grade and another going into second grade. Both also will be learning virtually this fall. 

We also have an adult daughter who graduated high school in 2019, but has a rare genetic disorder that resulted in static encephalopathy, and impacts many of her systems including the all-important immune system. She is currently served on the CAP-C Waiver and will age out next year. We began self-directing her CAP-C services recently to ensure that she wasn’t exposed to COVID-19. 

Doing the Best We Can

As a new school year begins, we are concerned our children are missing out on important learning and socialization opportunities, which virtual learning simply cannot replace. We worry they are all falling behind, but Arya most of all. On the other hand, we fear the alternative even more. So, we will do what we and other families like ours have done – the best we can.

We’ve made a few changes to prepare. I built a new school work station for my kids so they have a place to work that is only for school. We’ve noticed that our 7 year old learns best when he’s not alone, so one of our neighbors, who is in the same grade and class may be joining us for school sessions from time to time. 

We’ll be augmenting Arya’s synchronous learning (live instruction by a teacher online) and therapies with additional games and books that we’ve been using. We’ve also made the decision that in September we will return to dance class in person. It was a tough decision and not without some second-guessing, but with the small class size and social distancing measures in place we are moving forward. For Arya, dance is very much an integrative therapy that improves her receptive language, as well as her physical strength and coordination. 

For more information about going to back to school online and tips for making it work, read Virtual School Tips for Students with IDDs.
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