COVID-19 & Our Special Needs Family

As COVID-19 expands across the globe, I’d be lying if I said I wasn’t worried...

Two week ago, I wasn't worried. Our family had started social distancing, cases in our city were low, the risk to children was low, and Cami's doctors were optimistic about how she would handle the virus should she contract it.

Things have changed.

Our Angelman Syndrome community has suffered the death of a young adult with AS who died of COVID-19.

The number of cases and deaths in our county are rising rapidly.

Our state implemented stay-at-home orders.

Our healthcare system across the nation is stressed.

Resources are dwindling.

Healthcare and government leaders are having to make tough decisions and emergency plans to ration supplies.

Some of these plans suggest those with disabilities, cognitive delays or neurological issues will be less likely to receive life saving interventions such as ventilators.

Advocacy groups are filing complaints.

The President's administration is warning states and healthcare providers that disabilities are no reason to discriminate in COVID-19 treatments.

It's a stressful time for everyone.

Here's our family's COVID-19 problem: We don't know what we don't know.

On a GOOD day, to be the health advocate Cami needs and deserves, we need to be more prepared, researched, and educated than we have ever needed to be for her typically developing big sis.

Cami is just as likely as anyone else to get this virus, but due to her neurological issues, medications, seizures, and low muscle tone, she may face more complications than most. Should she contract this virus, we may need to be ready to FIGHT.

We don't know how bad it could get.

We don't know if healthcare providers would have the resources they need to care for her.

We don't know really know exactly how to advocate through this besides trusting our gut.

We don't even know if we'd be able to stay with her should she be admitted to the hospital.

So, we isolate.

We are working under the theory that most people will get this virus at some point, including Cami, but, we are doing our best to control when. We hope it will be at a time when our healthcare providers are more rested, have access to the equipment and supplies, and aren't forced to make decisions on who will receive lifesaving care... and who won't.

For us, this means we are following the CDC and our local government guidelines, social distancing, and washing hands a ton. We have moved all of Cami's therapies to telehealth appointments. We've stocked up on her seizure control diet foods, and we continue to work from home limiting our interaction with anyone who may be exposing themselves to this virus.

The silver lining.

I'll be honest, this is actually going really well for us. We're enjoying the opportunity to slow down, to not fight with the kids to hurry out the door in the morning, and to spend more time cherishing family movie nights, scavenger hunts, and bike rides. We are EXTREMELY grateful for our flexible and supportive jobs, the beautiful weather we've had that allows us to get outside often, Disney+, and a house that gives us personal space when we need it. We've set up a flexible "pre-school at home" schedule that includes a daily lesson, story time, arts and crafts, gym class, cooking class, and a daily act of kindness.

As for Cami, she's in virtual therapy appointments nearly every day. She works in her physical therapy equipment (her stander and crawler), engaging in new sensory activities, and we are increasing her use of adaptive communication tools.

A shout out to all you Curve Flatteners: We're grateful for you!

Thank you for doing your part to support our healthcare system right now. It's a huge sacrifice, I know, but together we are ensuring that kids like Cami, the elderly, and those with threatening health conditions have a fighting chance should they contract COVID-19.

Until next time, I hope you and your families are staying healthy, in good spirits, and focusing on the silver linings this challenging time in our history is providing us!